I Will Not Suffer In Silence

Tuesday, January 4, 2011

I woke up at 6:45am and got ready for a psychiatric appointment. Since I had been out with my husband last night, this meant that I got 6 hours of sleep when I’d been so used to 8 solid hours, so I was really tired.

Outside it was so cold that there was frost on my car windows. I’m glad I’ve kept my snow scraper with me all these years after having moved from Michigan! It came in real handy that day.

After scraping ice off half the windshield

It doesn’t snow at ground level in the Bay Area, but every winter does bring some frost on the ground and on the cars. After scraping and warming up my car, I successfully drove to my appointment, but was late because parking was stupid. The meters in two out of the three places I tried to park were not working correctly. Finally I parked and went inside the building. They have an elevator, so I used that rather than brave the stairs first thing in the morning. My mid back was already stiff and sore from getting into my little Neon, driving, and getting out of the car again. Any time I have to twist side to side for anything, the pain ramps back up again.

My psychiatrist still wants me to try Abilify. She’s been pushing this on me since September, 2010 and I’ve been too afraid to try it because of all the side effects. She offered to get me an even smaller prescription dose than she gave me in September (which is still sitting in the cabinet), and she said while I’m off work already, this should be the best time to try the Abilify to see if I will have side effects.

My rationale states that I want to be alert to any possible surgical side effects FIRST. I don’t want to try to figure out if my mood or whatnot is caused by EITHER surgery OR the Abilify. Too much on my plate, y’know?

After I got out of the psychiatry appointment, I decided to take the stairs down instead of using the elevator. There were three flights of stairs. I took it slowly, but by the time I reached the bottom, sure enough I had pelvic cramping going on.

When I got home, despite being in pain, I wanted to get some housework done, so I tackled laundry. I slowly loaded up my laundry basket with two loads’ worth of dirty clothes, and then scooted the basket over to a waiting luggage cart. I finagled the basket up onto the luggage cart and secured it, then towed the laundry basket out to the back of the house where the laundry room is.

After the first load washed and I had put it into the dryer and the second load into the wash, I took a nap, because all of that had worn me out. I set out 600mg Advil and a half Tylenol 3 for the pain, but then refused to take the meds all day because I’m stubborn like that.
I slept for nearly an hour.

After my nap, I was still really tired, but I brought in my laundry and just let it sit (folded) in the basket. I threw myself together to go join a friend for her birthday dinner. We were late, which made me feel bad, but it all worked out. She was at a Mediterranean restaurant, and since I still have not reintroduced solid meat to my diet, there was very little I could eat. The waiter cobbled together a vegetable plate for me, consisting of sliced asparagus and bell peppers, and I used those to dip into the Hummus. I also drank red wine for the first time since before surgery. I was happy to have the wine because my social anxiety was spiking again. There were only five of us for dinner, but still, I felt very awkward socially.

To my glee, I did not have any major digestive problems with the vegetables or the wine! Yay! The bell peppers usually give me heartburn, but even that was minor on that night. Awesome.

Our friend left to go off to a dancing class, and we paid her bill, being that she was the birthday girl. We then got back to our car and my husband drove us over to Forbidden Island Tiki Bar, where we met up with two more friends who had secured an area for our birthday girl. We hung out and had drinks - I drank an Exotica (Coffee liquor and other flavours in a martini glass), a Chamborlada (Chambord and Pina Colada), and part of my friend’s birthday Fugu drink that she could not finish. That was enough to get me pretty tipsy, nay, drunk. Thankfully, not a sloppy or embarrassing drunk. Chatty, yes. Having fun, yes. It was a good night.

At Forbidden Island Tiki Bar for a friend's birthday

We got home around midnight and I went immediately to bed after consuming a pint of water. I had to be up the next day for my post-op appointment in San Francisco.

Firsts for Day 18:

• Drove alone on my own to Oakland and back - stiffness and soreness returned.
• Did my own laundry, using a luggage cart to haul the basket.
• Worked on some homework.

Limitations:

• Still having pain with climbing stairs and driving.
• Lifting anything over 5lbs is still painful.

Complications:

• Still having thick mucous vaginal discharge - doesn’t smell foul anymore. Is likely ovulation.

I slept until 10am - another eight hour night before my body was too sore to stay in bed. Actually I should say my body is sore by the 6 hour mark, but I am stubborn and keep going back to bed until it’s been 8 hours. Oh how I love 8 hours of sleep.

The first thing I did when I got out of bed was spend about 20 minutes walking around the house and doing gentle stretches.

Today I cleaned up some papers and such on the kitchen table, but I didn’t get my ass out of the house until after 4pm. The weather was cold, overcast and windy - I think it only got up to 50°F today, and it sprinkled throughout the day.

My husband and I got some pet supplies for the cats, and then we went for a short walk behind the shopping center, which has a sidewalk overlooking the estuary (which flows into the San Leandro Bay). There are observation decks one can climb up to in order to get a better look at a view of the estuary and the Oakland hills. I climbed a bit faster than I had done yesterday, and coming back down the stairs, I was able to go at my normal pace. I did so giggling with delight.

However, less than a hundred feet later, I began to get stabbing uterine pains and had to slow my walking pace. I adjusted and picked up my pace again, but I still struggled with the pelvic pain. My husband stopped into a game store to ask a game console question, and while I stood there waiting, the pain reached a 5 on the pain scale.

When we got back to the car, I took 600mg of Ibuprofen. I’ve been fatigued ever since. I spent the rest of the night on the couch taking it easy, which sucks, because I had wanted to try going to a nightclub for the first time since before surgery.

Food I ate today:
Leftover Indian (Saag Paneer)
Gluten-free freezer pancakes
Boost drinks
Rice Chex cereal
Homemade macaroon a friend had made
20oz of water
Coconut juice

Note:
The foul smell abated some and the bloody discharge went away overnight, but late this afternoon I had some thick mucous discharge again. I’m wondering now if this is ovulation already. Today is about Day 6 of the new cycle, and I always get mittelschmerz on Day 8 of the new cycle. Could it be a couple of days early?

Complications:
I am still having the round of diarrhea or loose stool every morning. I’m guessing this is still a holdover from when the surgeon bumped the mesentery on the way in with the camera.

I nearly threw up tonight after eating the same kinds of food I’ve been eating; gluten-free pancakes and Boost. I also developed a headache so I took my temperature and the temporal digital read 100°F. The glass therm read 99°F. Bah, whatever.

Firsts for today:
I wore loose-fitting slacks! I looked like a dweeb, but at least I have a pair of slacks I can wear to work in the first week back, which is coming up fast.

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.

Sunday, December 26, 2010

This is not how I wanted to end Christmas.

When we got back home from our friend’s house, I was due for another dose of medication. I was hungry again, so I decided to eat a cup of mushroom soup.
With my mushroom soup, I drank a cup of egg nog, because it was Christmas night. I have been tolerating the Boost drinks, which contain cow’s milk, so I figured I’d be able to drink egg nog.

Shortly after ingesting the egg nog, I began to feel queasy and gassy. Not long thereafter, the massive gastrointestinal and pelvic pain started, along with a stinging fullness under the diaphragm. I sat up straight but that did not help. I walked around, but that did not help. Then I grew very weak and started shivering. My feet had been cold all day long, so I decided I would fetch the corn heating pad and put it on my feet. When I stood up off the couch, I nearly fell down. My husband had fallen asleep sitting up on the couch, so he was oblivious to my current situation. I shuffled hunched over, clutching my stomach, and made my way to the bedroom to get the heating pad. I could not find the heating pad where I thought it would be, and that’s when I broke down in choking sobs. This woke my husband, who sleepily came to my aid and asked if I needed anything. I was hysterically sobbing by this point because of the intestinal, stomach and pelvic pain. My husband was able to hear me say through my sobs that I needed the heating pad warmed up and that I wanted it placed on my feet. However, getting me to do anything other than stand hunched over, clutching the bed while I sobbed, was an issue for several minutes.

At 4am, I woke to use the bathroom. The bleeding had ramped up again and caused some pelvic pain. I got back into bed, but could not get comfortable. I tried to turn over on my right side, but it created instant abdominal swelling and pain, which scared the hell out of me.

I got back out of bed and went to the kitchen and made myself some ginger tea. I brought the tea with some Miralax into the bathroom with me. Turns out I did not need to spoon the Miralax into my tea - within moments of sipping just the ginger tea, I was able to have a bowel movement, which was soft.
However, the defecation caused further intestinal and stomach pain, as well as nausea.
I went to wash my hands after using the toilet, and realised that I might vomit at any second. I leaned over the sink, but that caused intense abdominal pain. I grabbed a large plastic bowl, which I keep in the bathroom and use to soak my pads in each month, and placed that into the sink. I took my temperature and it was 98.8°F.

It was around 4:23am, and I picked up the bowl and stood at my full height and let fly. I spent nearly 20 minutes vomiting. It was thick, and contained everything I had eaten in the past 18 hours. I noticed that the vegetables I’d consumed for dinner some 11 hours earlier had not fully digested. Neither had the chocolate mousse I ate roughly 8 hours earlier. I noticed too that the vegetables and the egg pieces from the Thai seafood casserole I’d consumed over 32 hours ago had also not digested.

At this point, I took note of the smell of the vomit, to make sure it did not smell like feces. I was on the verge of freaking out that my intestines had stopped working properly. However, the vomit smelled like vomit…which of course made me want to vomit some more. Alas.

I emptied the bowl carefully into the toilet and cleaned up everything as best I could. I washed out my mouth, cleaned out my nose, took another sip of tea and another sip of water. I took my temperature again. 99.5°F. Well, it’s likely elevated because of all the strain I’d just gone through. I then went to wake my husband.

He asked if I needed anything. I told him no, I just needed to inform him what was going on because I was scared. I told him I’d be spending the rest of the night on the couch because I could not get settled. I assured him I was not running a fever.

I chatted with friends on facebook, which helped a lot with managing my anxiety. Though it is unfortunate that people were awake in their own hells at that same ungodly hour.

Around 6:30am, the bleeding ramped up again. More clotting. Though I was experiencing pelvic pain, there was no way I was gonna try to take a Tylenol 3 or Advil on a stomach which was still so raw from all the puking.

At 6:45am, I was hungry enough to eat a few spoonfuls of cream of rice cereal with a bit of honey and ginger tea stirred in.

I went back to bed, and woke at 10:30am. I got up for the day because the pelvic pain and bleeding were too much to bear. My husband reheated some rice cereal I’d made at 6:30am, and I drank a cup of warm chicken broth with Miralax stirred in. I ate some jello, and then took my first Tylenol 3 in just over 12 hours.

That was around 12:30pm. At 1pm I took a second Tylenol 3, because the first one didn’t register.

Once the second Tylenol 3 kicked in, it enabled me to be dissociated enough from the pain to walk around. Around 2:30pm, I walked laps around the inside of the house. My pace was improving, but after about five minutes, I was totally wiped out.

At 4:30pm, I was still passing clots, and passed the biggest one yet. It was about half inch by half inch. Ugh.

I spent the day on the couch, though I did make myself get up and walk laps around the outside of the house in the afternoon.
Suddenly I was able to walk at a pace! I was amazed at myself.
However, I still fatigued very easily, and was out of breath quickly as well. Still, I did more laps around the inside of the house in the evening, again marveling at how fast my pace had become - in just 24 hours I went from a shuffle to roughly 2 or 3 MPH.

I experienced a migraine by 8pm that did not go away all night. I watched a lot of TV with my husband, and put a heating pad on my head. I refused to just close my eyes and sleep when I probably needed that more than anything.

Around 12:30am, my husband received some bad news, which set him into a really bad emotional funk. He went for a walk and didn’t come home for an hour. When he did come home, he got smashed drunk, even though I made him promise he wouldn’t. He came to bed at dawn, just as I was floundering in bed, trying to get up to use the bathroom. I told him my left arm had gone numb. It was my first night sleeping on my back, and I hadn’t given my head and neck proper pillow elevation. My husband was too drunk to get the hint that I needed his help. He gave me a half cocked smile and a thumbs up when I told him my arm was numb. I got super pissed off but just got myself out of bed and did my business. I stayed on the couch for the rest of the night, I was so mad.

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…

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.

I did wake up relatively pain-free, but not without having had a bit of a rough night.

I went to bed by 9pm because of the pain and immense fatigue. My husband came to bed sometime before midnight. I know because not long after, we were awakened by the phone ringing. It was my neighbor - her parrot had just died, and she was sobbing hysterically.

I got dressed and walked to the back of the house - she lives in the smallest unit in the converted Victorian. I spent the next hour with her - holding her, hugging her, talking with her, listening to her. I cried a lot, too. I have lost pets dear to me before, so I knew the pain. And I liked her parrot - he was quite a character. He was 20 years old. She said he hopped out of his cage and started making weird sounds, and flapped as he staggered across the room to be with his human. She put him up on her shoulder and I guess he tried to settle, and calmed for a moment, but got all twitchy again, then got weaker and weaker, and just fell into her hands and died.

Chili 1990 ~ 2010

My husband had to be up at 5am to drive an hour to the other work location for an early morning meeting, so I knew that me getting up at midnight and being gone for an hour like that was sure to disturb his sleep. It’s two hours earlier than he usually has to get up, so he was already not sleeping well to begin with. The fact that he had to get up an hour and a half before my alarm also meant that my disruption in sleep would greatly affect me.

When my alarm went off, I snoozed and snoozed til the last possible minute, but of course it’s fretful sleep when you hit snooze repeatedly. I was able to shower and get to work on time, though. I was thankful that the pain had passed.

However, by the time I got to work, I was already hypoglycemic and achey. The weird thing is that they did not expect me in today or tomorrow! It was written on the calendar and everything. The secretary was pretty confused, and said I’m always good about letting everyone know when I won’t be in, so how she wrote me off work like that was weird. I half jokingly told her not to worry, I might not last the day, anyway.

And so it was. The pain set in by about 10:45am, and the bleeding returned. It was all the stooping and bending, all the sitting down on the hard floor and getting back up again that did me in. But that’s what a preschool teacher does - a lot of moving around like that.

I was hoping that last night’s massive pain and bleeding had been “the last gasp” as my husband calls it, but I guess not. Although, the bleeding did not return with force today. It was just a bit of spotting. The pelvic pain was the thing that returned with force. I asked a fellow assistant teacher if I could do the snack cleanup duty instead of group time overview (because it meant more stooping and bending and getting up and down).

Even washing up some dishes and loading the dishwasher was too much for me. As I was drying the food containers a parent had brought, one of my head teachers approached me and told me it was the first day of her period, and her cramps were really bad, so she was going home. I wished her well and told her I hoped the pain would not be too bad for too long.

I returned to class and was on my way to get my water bottle when my other head teacher looked at me and said, “are you in pain?” I stopped and blinked. I thought I had masked it well enough today, cuz I was trying to stay up and about instead of giving in to the pain. I sighed and said I was just about to take some Advil, that the cramps had ramped up again.
The teacher told me she had worked with her friend’s sister in this school before, and one day she passed out from the pain. My eyes grew wide. I reassured her that I have never passed out from the pain, and that I would go home if the pain got too bad.

She replied, “You don’t look good. You should go home. We’ll be okay.”

So I took 600mg Advil and wrapped up the snack cleanup that hadn’t been fully finished because the newest assistant seemed a bit overwhelmed today. It’s okay - she’s doing an awesome job. Duties just sometimes get behind the pace of the schedule. We go with it and try to keep the flow. She provided overview with the children at group time to be there for another assistant teacher who was running the group, and I cleaned up and it worked out.
I made sure the afternoon supervisor would be okay without me, and then I saw the children out to the lunch tables at 11:30am with the rest of the lunch staff, and then I went home for the day.

The other weird thing that happened was when I phoned my husband to tell him I came home early. He asked, “Came home? From where?”

I blinked at the phone.

“Uh…from work. I had to work today. It’s Thursday.”

He replied that he didn’t know I was well enough to return to work at all, after having seen the condition I was in last night when he got home from work. I giggled - he’s right, how could he have known my plans if I’d not told him, “tomorrow I think I’ll be okay enough to return to work.”

So I told him how I had felt better and how after a few hours, the pain returned, like it does.

He told me to take it easy for the rest of the day. Sweet man.

I got home and ate my leftover Indian food (Saag Paneer and rice), and felt the crushing weight of fatigue upon me. But my mind would not let me sleep. I’m 15 days from surgery and all I can think about is getting things in order before the downtime.

It didn’t help that I got restless by being home all afternoon.

The carpets were filthy.

I vacuumed.

I COULDN’T HELP IT!

I wanted to clean out the fridge. I wanted to clean the bathroom walls. But I didn’t, because I knew it would make the pain so much worse. As it was, the vacuuming brought on a new round of cramps. I knew it would, and I did it anyway, because I was antsy and had cabin fever. The fact that it’s raining again doesn’t help the pelvic pain or my joint pain, either. Bleh. And I’ve been freezing all day. I had the furnace on and the space heater. Stupid hormonal whack. Stupid illness.

That’s how it goes.

I crawled into bed at 8pm, and texted my husband. He was exhausted from his long work day, and was now on his way to band practice.

Aww man! I forgot he had band practice tonight.

I’d been waiting for him to get home so he could declare how exhausted he was and just order us some food.

Poop.

So out of bed I got and made some gluten-free mac ‘n cheese with canned tuna.

It’s the same thing I made for lunch yesterday. Le sigh.

But I’m being responsible and eating what’s in the house, instead of ordering out like I did last night. And besides, the bills need to be paid up so that I don’t worry about ‘em during recovery from my surgery. The more bills and such I cover right now, the easier the financial burden will be on my husband when he has to support me for a couple of months while I get back on my feet financially after having been off work for a month. I’ve been doubling up payments on one of my credit cards, too. Paying bills online today was one of the things I was able to check off my pre-surgery To Do list. The other thing I checked off the list was scheduling the ECG. I had no idea my family doctor could do that in office! Oh. Crap. Gotta make sure the insurance will cover it at that office, though.

Anyway, so here we are at 9:30pm. I’ve taken a total of 600mg Advil and 2 Tylenol 3 half pills today. And actually, I might take another half pill soon, because the low and mid back pain is increasing like it did last night before bed. :(
I need to get out of bed one last time to put away the uneaten portion of the mac ‘n cheese for tomorrow’s lunch.

Here I go.

Because my first pre-op appointment three years ago was not documented, I give you… super long ass detailed entry for this pre-op appointment!

I woke this morning around 6:30am in debilitating pain. I estimated I was 7.5 on the pain scale. Getting out of bed ramped it up to 8 on the pain scale. I wolfed down some cereal and took 1.5 Tylenol 3 in an effort to whack the pain.

Just after 7am, we loaded the wheelchair into the car and were on the road. I was nauseous and shaking from the pain - about an 8.5 on the pain scale. I cried on the way to the doctor’s office.

The pain meds kicked in about 30 minutes after taking them. I became chatty and felt alright. We were on the Bay Bridge, just approaching the toll booth at that time.

Then it went aweful again.

I became really dizzy and nauseated from the Tylenol 3. It occurred to me then that this had happened before - on the drive back from our one year wedding anniversary in Mendocino, California last year. I was on Vicoprofen at the time, but the results are similar enough - I was severely nauseated and dizzy and hunched over in the seat to try not to vomit.

So I noted out loud that when I am on codeine, I must not be in a moving vehicle, nor should I be ambulatory.

The visit itself went well. Nurse Jessie could see that I was poorly, so she ushered me into the room she usually reserves for me when I visit. She had me lay on the exam table and put a blanket on me. She got me a cup of hot water to drink.

My husband was with me the whole time. I was able to snooze for a few minutes, and then Dr. Giudice and her assistant, Dr. Skillern, came in to start the visit. At first Dr. Giudice described the general procedure and what to expect. She let Dr. Skillern talk a few times. After a few minutes, I said I was confused - I thought Dr. Wang was going to assist. Dr. G and Dr. S looked at each other, then back at me, and Dr. G simply said, “she was, but no.”

Oooooookay then! Wonder what untimely end her employment met!

At this point, I gruntled and shifted and forced myself to sit up so I could take notes, because I noticed my husband was not writing down anything on the questionnaire I had typed up. My surgeon took the 3-page document and we went over it together, twice, just to make sure everything was covered.

You really should copy these questions for your own surgeon interview. I got the questions from various places on the web, as well as using my own questions.
The questions are barely in any ordered format.

1) How many pelvic laparoscopies for endometriosis have you performed?

Well over 500 since 1987.

2) How many in the past month?

Dr. Giudice is a big ‘ol rock star now, so she often travels for seminars and such. She said that 93-95% of her surgeries per month are specifically for endometriosis.

3) How many had complications during the procedure?

She hates to jinx herself, but she says only one complication, and it was a fibroid issue - she discovered it was embedded in the uterine wall when she tried to take it out….

4) Do you have rectal surgery experience?

Yes, but it depends on how serious the endo is in that region.

4a) If not, will you have someone on hand in case there is rectal involvement?

No - she said that if adhesions to the rectum and intestines are found, they’ll do what they can within reason. However, if it requires a bowel surgeon, it’ll have to be yet another surgery. They just don’t have the surgeon on standby like that. Ugh.

5) Do you have intestinal surgery experience?

No

5a) If not, will you have someone on hand in case there is intestinal involvement?

See 4a above.

6) How much experience with pelvic laparoscopy for endometriosis does your assistant have?

More than 84 laparoscopic hysterectomies.

7) How many staff will be in the operating room with you, and what are their jobs?

Roughly six people: surgeon, surgeon’s assistant, anesthesiologist, anesthesiologist technician, scrub tech, and a circulation nurse.

8) Will you please correct my retroverted uterus?

Sadly, she cannot. She said the uterus is already held in place by a series of ligaments, and to push it into a position it was never in, even if it’s the “right” position, can lead to tissue damage and serious side effects. She said she’d see what she can do while she’s in there - perhaps she can put some sort of material between the uterus and the bowels so that it’s not gluing itself to the bowels anymore…

9) What sort of preparation is necessary for this surgery?

She wants me to do a bowel prep. HUGE SAD FACE.

10) What kind of anesthesia will be used?

General - I will be intubated.

11) Will I be given Versed?

I can ask for it at time of surgery.

12) How long do you expect the procedure to take?

Two and a half hours.

13) If one or both ovaries are badly damaged from the endometriosis, will you take one or both out, and what are my next steps (even if it’s just one ovary that has to be taken out)

It is not her intent to take anything. She only intends to treat surface disease and excise the endometriomas.

14) Will there be photos or video of the surgery?

Photos.

15) If a biopsy is done, when can I expect to receive results, and will my doctor call me?

Ten days post-op, though the holiday may delay until after Christmas (unless it’s bad news, then I’ll be notified immediately). The doctor herself will call me in either case.

16) I do not plan to take hormonal suppression after surgery – will this prolong healing time?

Not per se - taking hormonal suppression only serves to help prevent regrowth.

17) What vitamins/supplements should I avoid just prior to and after surgery?

Everything on my vitamin and supplement list is safe to take up to the day before surgery.

18) What foods and drink should I avoid just prior to and after surgery?

No food, drink or vitamins after midnight the night before surgery - otherwise, just stick to my current diet.

19) I know that being overweight can make me more high risk during surgery. How much weight should I lose in the next two weeks?

Not necessary to lose any weight (I am 5′5″ and weigh 166lbs and Dr. Giudice says it is not considered dangerous or obese for the surgical procedure).

20) What areas of my body need to be toned up in the next two weeks?

Nothing I can do will matter for this type of surgery, says Dr. Giudice, but if it will make me feel better, go for it.

21) Would a tubal ligation help in any way towards the “hormonal suppression” idea, or is it merely a birth control move?

It is merely a birth control move.

22) How many menstrual cycles do I need to give it before I declare this surgery a success?

It’s always hard to say. The risk of this surgery is that I might not experience any pain relief at all, just as with the first surgery. I was told not to be so hard on myself. I was told that they hope that I would have immediate benefit from surgery, but giving it 3-6 menstrual cycles is also rational.

23) When can I return to work as a preschool teacher?

Six weeks, preferably. Four weeks is okay with restricted movement.

24) When can I resume bicycling?

Four weeks.

25) When can I resume sexual intercourse?

Four to six weeks.

26) What results can I expect from this surgery?

Find the scar tissue and fix it. Correct the pulling on the right side.

27) What is the next step if this surgery does not work?

The Mirena IUD will once again be suggested, along with seeking help for Chronic Pain Syndrome, and continued pain management therapy.

Notes:
I’ve been worried about sleep apnea and heart murmur again, because I often get up multiple times during the night to urinate, and I often have a racing heartbeat in the middle of the night. This has been going on for about a year, but I’ve been too stubborn to accept a new medical issue. Now that I’m facing surgery, I’m concerned. I would like to push for an ECG, to see if the murmur is stable since my last exam, which was in August, 2001 at CPMC.

I was told to talk to my primary doctor. I called my insurance and they said I can self refer, so I’ve got a call in to a cardiologist.

Other notes to doctor:
Please be super careful when intubating me, because last time, my lower right inside gums/jaw was scraped open. I had a gash to worry about healing in my mouth, on top of the pelvic wounds. It took weeks for my mouth to heal up.

I was told to tell this to the anesthesiologist.

Other notes to doctor:
Please be super careful when catheterising me, because it took me several months after surgery last time to regain muscle strength to stop leaking urine.

She had her assistant note this, and said they will use a pediatric cath this time.

After the appointment, which I ended because I really needed to use the bathroom, I dreaded the walk back to the car. The Tylenol 3 was still coursing through my bloodstream, so even the elevator ride back down to the main floor made me wanna hurl. Once outside, I was off balance and shuffled a lot. I had a fixed gaze and probably a stupor to my face the whole way back to the parking garage. I did not use the wheelchair, though, because I felt that sitting and being pushed would be like being driven in the car, and that made me super nauseated.

The car ride back home was just as nauseating as the car ride to the appointment, but with the added hell that the pain relief part of the medication was wearing off. I felt every single bump in the road, and yelped continually. I declared that we are renting a Lincoln Continental or similar for surgery day. I want something comfortable and quiet to ride in. Hubby said no problem. ;)

I had blood work to submit, so my husband took me to the lab in our town. It’s not usually busy. I staggered in and filled out the paperwork, and waited. There was one guy ahead of me, rattling off all the names of people close to him who’ve died in the past year. So sad. He was getting blood work to rule out some kind of illness - he was saying he hoped he’d get good news back. I hope he does, too.

The phlebotomist I had was horrible. I think she was still rattled from the last guy, cuz when she emerged from drawing his blood, she looked like a deer caught in headlights. And she was young. She asked me what my blood draw was for and when I told her, she had no idea what endometriosis was, and told me she hoped the surgery lasted so that I’d never need another. Feh. That’s not how endometriosis works, but thanks.
She stuck the needle in without first securing the tourniquet or even telling me to squeeze my fist. Then she moved the needle around confusedly when the blood didn’t start pouring into the vial. I squirmed and yelped and whined, just as my husband returned with his coffee and said ‘Hi!’ … then he went grey and backed away into the waiting room.
The phlebotomist apologised but kept at it. A few seconds more and I could take no more. I told her to stop. She looked defeated. I told her to try the other arm, and not until the tourniquet was on for a moment, and not until I was squeezing my fist. She obeyed, and the blood squirted forth into the vial.

When we got back from the lab, I got into my pajamas, ate a couple of potato chips and went to bed. I was only able to sleep for about 45 minutes before I woke starving. I ate some pumpkin pie and something else - I forget.

I was unable to go back to sleep, but at least the pain had gone back down to a 4. I was still pretty high from the one morning dose. I kept trying to nap, but it wouldn’t last long. Around 3pm, I finally fell asleep for an hour and a half. The only reason I woke was that my cat had knocked against the inside of the closet. The noise alarmed me, which alerted me to the fact that my bladder/uterus was screaming to be emptied. I also noticed at that point that I was insatiably thirsty. I went through a pint and a half of water in minutes. This of course led to me having to pee every five minutes for the next two hours…

At about five minutes to 5pm, while bedridden and hanging out on the laptop, a new round of cramps appeared. I had the webcam on while chatting with my husband, so he got to see the change in my face, and he mentioned it. The cramps ramped up immediately from a 6 to an 8. I whimpered and yelped and tried to breathe. I took a full Tylenol 3, cursing the entire time, as I had only had one half hour of lucidity all damned day, and now I had to start a new round of being high on pain meds.

No position was comfortable. I stood up. I squatted down. I got on hands and knees. I stretched up, then down. I tried heating pad on the front, then on the back. I sat on my knees. It wasn’t until the Tylenol 3 kicked in and I had some dissociation that the intensity calmed down. Now I can feel the stinging pain, but at a distance. I have low level nausea from the meds and all the blood. And if I wasn’t already tired, I’m more tired. When my husband gets home, we’ll have Indian food delivered and then I’ll go to bed for the night, and hope I wake up pain-free tomorrow.