I Will Not Suffer In Silence

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.

Friday, December 24, 2010

Dr. Shem from UCSF called me back. She was nice to me and talked to me about my concerns of low grade fever and bleeding. She said Dr. Skillern is in the office today and so she’ll talk to her and give me a call back. I was grateful that Dr. Shem was being a go-between, because I’m really just fed up with Dr. Skillern.

Shem called back again and said they are not concerned - the bleeding is likely my period, which was originally due on Thursday, December 23 anyway. It’s all in the way she said it, though. Not condescending or dismissive like Dr. Skillern always is.

Dr. Shem called in a new prescription for Tylenol 3 - a one week’s supply. I expressed concern about being on all that Tylenol 3, and was told that they’re not really worried about irreversible liver damage after a week or two of intensive Tylenol 3 use after a surgery.

She said that If I get through the second round of Tylenol 3 and I’m still in debilitating pain, then I must go back to UCSF to be seen again. I am fine with that.

That afternoon, my husband had errands to run. I was tired of being cooped up in the house, and there’d been a break in the rain, so I asked if he could drop me off at the beach with a camping chair.
He was enthusiastic to the idea and fetched the camping chair from the storage unit. He walked me out to the beach and set up the chair for me and I was a happy girl. Then we agreed to meet back up in one hour.

Sittin on the cold beach all bundled up

Crown Memorial Beach, Alameda, CA

View of San Francisco

Closeup of San Francisco

While I sat there on the beach, staring at the water and being so happy to be outdoors under the sky, I noticed an Asian family of three to the left up the beach a bit. There was a woman, a man and a female child. They had stuck roses into the beach, and lit some incense. The scent that wafted smelled to me like sandalwood or something earthy like that. Perhaps, since it was Christmas Eve, they were burning frankincense and myrrh.
When they were done with their tradition or ritual, they gathered up the roses again, and tossed the roses adrift in the San Francisco Bay.

Family with roses

I watched the roses float past and was mesmerised by the whole thing.

Roses floating past

Roses washing back ashore

Some of the roses washed back ashore, while others continued to float on the current for a bit. I watched until they were out of sight, and then I got up out of my chair and walked along the beach for as long as my body could stand it (i.e. about five minutes).

The wind was cold and I was shivering, but I was so glad to be outdoors.

Roses washed up on the beach

Happy Holidays to you and yours.

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.

Tuesday, December 21, 2010

I ate leftover Saag Paneer for lunch. Next follows TMI, but it’s important to note for the post-op recovery process.

Are you ready?

I had my first solid bowel movement. The gas pains leading up to it hurt like hell, stung, had me crying.
This played out the same way as last time - the poop would not come out. I had to breathe and focus and try not to force it.
I sat on the toilet for quite some time. Finally, I passed gas twice, which shot out some solid waste, then the movement itself, which was long and tightly packed.

Around 10pm, I had stinging pain in the lower pelvic region - it felt like bladder pain. That, combined with moderate low back pain, meant that it hurt to take deep breaths.

My meds had lapsed again, so I took a Tylenol 3 and waited. I took my temp - 99.9°F on glass therm, 99.6°F on the temporal therm. After 11pm, I took my temp again. It was still near 100°F, so I called the surgeon’s office.
The surgeon’s assistant called back by midnight and sounded condescending and impatient with me. She said it’s all in the normal range. She stated that she doesn’t care that my normal temp is 97.5°F - it’s all still in the normal range of temperature and pain, she says.
After talking for a bit, she relented and said she’d call in Cipro (antibiotic) for me, in case I have a UTI going on. I swear, these doctors. It’s like pulling teeth.

Physically, I was still up and walking around the house and doing my prescribed breathing exercises throughout the day. I was still shuffling rather than a striding walk. It hurt like hell to get up or settle back down into a chair, onto the couch or into bed. My husband often had to help me lift my right leg and put it where I needed it to go, because it was too painful for me to do it myself.

Medication-wise, I was still on Tylenol 3 every few hours, but I was no longer taking two pills together at a time. Actually, I’d stopped doing that two days after surgery. I wasn’t even taking two Tylenol 3 within an hour of each other. I’d say that Day 4 post-op was my best day so far. I took Tylenol 3 at 12:30am, 7am, 12pm, 5:30pm, 5:50pm and 9:54pm. The only time the pain got really bad was in the evening, when I took two doses of the Tylenol 3 twenty minutes apart.

Recovery was going really well.

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 was really freaking out over the surgery this time around because it was happening on a waxing moon in Taurus during a Mercury retrograde in Capricorn. I blamed all the communication errors prior to surgery on the Mercury retrograde.

Hell, the night before my surgery, after I’d continually not heard any fine details back from my surgeon, and I had made the decision to ingest magnesium citrate for the bowel prep, the surgeon’s assistant called me and said I didn’t have to do a bowel prep at all!
I told her it was a good thing I’d already ingested half the bottle! She told me I could just stop at that, and whatever happened, happened. She went on to apologise and said she couldn’t understand why the GoLytely bowel prep type products were all prescription. Weak excuse. She then went on to say I could tell my surgeon it was all the assistant’s fault. She apologised again. Then the surgeon’s assistant said there’s controversy over whether to do a bowel prep for any surgery other than a colonoscopy; that if the bowel were nicked during surgery, she’d rather it be solid matter rather than liquid, which would spill into the abdominal cavity and cause sepsis.

I thought two things after this conversation: 1) She was NOT helping with my fretful emotional state, and 2) she’d better not be at odds with my surgeon during my surgery!

The 5oz of magnesium citrate gave me about 4 episodes of diarrhea. I just had urgency - it wasn’t violent or explosive and I did not have major cramps like the surgeon’s assistant had warned. So, FYI - you might be interested in doing 5oz at a time of the stuff. Let the first round happen, then take the remaining 5oz, or not, depending on how cleaned out you feel, if you need to do a bowel prep.

I went to bed probably just shy of midnight the night before my surgery, and woke around 3am with annoying uterine and right side ovarian cramping. At the time, I was exactly a week before my next period, so the cramping is, for me, “normal”.
The pain was estimated to be about a 4 on the pain scale.

When I woke and was getting ready to go out the door early the next morning, the pain had elevated to about a 5.5 on the pain scale. The ride to the hospital was a bit painful, and I was really in need of 800mg Ibuprofen, but I could not have any. I had not been allowed to have any ibuprofen for the week leading up to the surgery (but I forgot and had some that prior Sunday after having walked around all day at a Christmas fair).

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.

I still have not begun taking the Lamictal. Still too afraid of experiencing the possible side effects.

I had an appointment this past Monday with my psychologist. This is the same psychologist who, by either the first or second visit with her, decided that I have Bipolar disorder and need to be medicated ASAP.

By the fourth visit, I asked why she kept pushing for me to take meds, when she is a psychologist, not a psychiatrist. She claims she went into the wrong field and SHOULD be in psychiatry, as she knows enough about meds.

Uh-huh. I see.

Anyway, I saw the psychologist this past Monday, as I said. On this particular day, I had awakened to a 99.8°F temperature, but still went in to work. I experienced low uterine pain and low back pain for much of the day, and generally was highly emotional all day. By the time I got to my shrink appointment, it’s what we ended up talking about was the fact that I was PMSing and in a bit of pain.

The psychologist - I haven’t mentioned this before - but there are two things I really, really dislike about her. One, she flutters her eyelids and often goes on for entire paragraphs worth of talk with her eyes closed and/or fluttering. Two, she rambles and doesn’t let me get a word in edge-wise, often talking about something meaningless to my situation, or trying to relate something to my situation that doesn’t relate at all. I finally have to say STOP! loudly to get her attention, so that I can TELL her that what she is saying holds no meaning for me whatsoever.
The last example of the meaningless is when she told me for the third time that she knows for a FACT that *I* will not experience side effects on Lamictal, because she has first-hand experience, seeing her daughter on Lamictal, and she was FINE.

Okay, number one, it’s SECOND-HAND EXPERIENCE, because it’s your daughter, not you. And number two, your daughter does not have endometriosis. She has a seizure disorder. So you cannot tell me for a FACT that *I* will not experience any bad side effects.

She of course wrote me off when I boldly spoke up.

So there we were, talking about my PMS and cramping and my ongoing major depression, when she mentioned that I try to get on disability. I told her I tried that already and was rejected by both federal and state.
This woman sat there and tried to convince me to play the state and federal governments! She told me to miss more work so that I *can* qualify for disability! I told her flat out that I will NOT play sick JUST to get disability pay, because in playing sick, I commit to routine check-ups and drive-bys from the state and federal government, who will make sure that I am in fact, truly disabled.
When they photograph me at the grocery store with a basket on one arm, or photograph me driving in my car, or photograph me going to the gym or whatever - I will lose my benefits. Then what? I have a stain on my record as someone who was a fraud. I may be fined or worse. Then I have to try to get a job again.

The disability insurance people do ’spy’ and take photos - it is part of their job. I worked for an insurance company which provided disability benefits to auto workers. I had to be the one to make the pay cut-off phone calls after people were caught on film doing things they said they could not do. It’s just part of the job in that industry.

So I told the psychologist that going down that road meant playing sick ALL THE TIME, and I will not do that. I told her I have my precious 7-14 days each month where I am active and can get shit done, and I’m not going to give that up just to collect some disability pay.
She kept making a point to stress how much pain and suffering I’m in, and how SHE doesn’t like to see me in so much pain, and wouldn’t it just HELP if I went on disability?

I told her NO, it WOULDN’T help. I told her about the joy I get from the children at work. I told her about how much I love to be able to get on my bike to go to work or run errands. I told her I like roller skating and going dancing - when I am able to do these things, I DO them. I told her that if she takes these things away, I WILL go ahead and kill myself.

When I left the psychology appointment, I was MAD. I went home, changed into my workout clothes, and went to the gym for an hour, despite the low-grade temperature and the uterine pain and low back pain.
Then I walked a half mile to Walgreens and back again to pick up my refill of Lorazepam. I popped two on the walk back home. When I got home, my husband was home from work. I collapsed on the couch in tears, and told him about the visit to the shrink and how I’d rebelled by all the exercise I did. I said the exercise made me feel better, but overall I was more depressed because of the psychologist.

My husband was hopping mad at this woman, of course. He held me and sided with my every reason for not wanting to go on disability. I love my husband.

I stewed over the shrink all of Tuesday, and then on Wednesday (yesterday), I was feeling outright rage. I called on my lunch break and left a message for her.
She called me back and left two voicemails. I could not answer the phone because I was in a meeting with my school director, who wants to place me at the other school location. I’ll go more into detail about that later on, if the move happens.

When I finally had time to listen to the voicemails, the psychologist sounded shaky and emotional, and repeated herself no less than four times about how she never meant for me to go on permanent disability - she was only referring to my post-op, and going on temporary disability.

I called her back or she called me back last night, and I told her in so many words she was full of shit. I brought up my pet peeves with her, and rehashed how the convo in session had gone. She apologised again, and said she’d had an excruciating headache for two days, and should not have come to work that day. I rolled my eyes. Excuses, excuses.
At the end of the phone call, we agreed to meet again next week to give it another chance. But actually, a day after my phone conversation with her, I’m still feeling really pissed off.

These psychologists - they’re more mentally ill than I am! I swear! I’ve not had one yet who I can endorse!!!

I’ve made up my mind. The psychologist is fired.

This leads me to the psychiatrist. I saw her a total of three times; once in January, once in February, and once in September. In-between that time, she was on maternity leave, and then I’d forgotten to reschedule with her. So the third visit counts as #1 all over again. A do-over as it were, since much had changed since February. On that first re-visit, she reviewed my history, and got caught up with my new history, including the cannabidiol incident (documented here and here). The psychiatrist told me there are several documented cases, including some of her own patients, who experienced depersonalisation and bi-polar-like symptoms after using marijuana or any form of cannabis. She assured me I am not crazy or alone in this.

And yet she wanted to prescribe Abilify, which is an anti-psychotic, often prescribed to schizophrenics and people with Bipolar I.

I asked her if she feels I am Bipolar. She said she’s not sure, based upon the fact that cannabis was involved. So I asked why she wanted me on Abilify. She said I should be on some kind of antipsychotic or mood stabiliser to get back to a baseline.

Up til this point, I had told myself I needed mood stabilisers. Now that the psychiatrist, on the first visit, wanted to give me antipsychotic medication, I began to get The Fear.

I told her I’d research the side effects and get back to her.

I called her a few days later and said no to Abilify and asked what else she could recommend.
Lamictal, the same thing my psychologist had suggested, was mentioned. So I said yes, and the prescription was filled.

I went so far as to cut all the pills in half as instructed.

But I haven’t taken one pill, yet.

I have The Fear.

It’s the fear of exactly what happened to me on Yasmin happening all over again (read more about that descent here).

I just don’t want to take another chance. I am convinced that the major depression and bipolar like tendencies I’ve had since the end of July are *because* of a medication (cannabidiol), and therefore I am convinced that taking *more* psychotropic medication is NOT the answer.

Let me work through this. Specifically, let me be active and work out the anxiety and the inner and outer restlessness.

I have been to the gym only 9 times this year. I have bicycled to and from work 17 times this year.

Ten of those 17 times have been within the current school year (which began August 31, 2010).

It is my personal expert medical opinion that I need to up the gym time. I need to become an exercise fanatic. THAT will manage my mental imbalance.

Give me some time to see this through.

If it doesn’t solve the issue, I’ll stare at the bottle of Lamictal again.

Back on September 13th, I said we could not afford a second surgery for me until sometime next year.

Well, I forget, but it was sometime last week that I called my husband’s health insurance company to find out exact costs and co-pays for a second pelvic laparoscopy.

To my utter surprise, it appears that we have already met the deductible for the surgery, and some of my regular visits to the UCSF campus for pain management have been applied to the overall co-pay.

So the expected $1,400 co-pay for surgery is actually just under $300!

I had another talk with my husband, and asked if he could *please* put money away at each pay period through December to help me go through with this surgery.

I also asked what kind of surgery Dr. Giudice prefers. The staff asked for me, and I got a call back telling me that she prefers electrocoagulation type laparoscopy, and will do that for part of my surgery. BUT where it comes to the ovaries, she prefers to excise the endometriosis. I was told that she will use her best judgement and likely do both electrocoagulation and excision wherever necessary during my surgery.

She is not afraid to tackle the endometriosis on the bladder reflection, but will be cautious.

She is not afraid to check in the recto-vaginal canal for endometriosis, which she thinks was missed during my first surgery (and is very often easily missed because it is hard to visualise in the laparoscope).

So…that’s that. I will continue to avoid Dr. Cook for the time being, who is too good to take health insurance. Much of my costs at UCSF can be covered with my insurance through Aetna with a famous and renowned surgeon who does both electrocoagulation and excision surgery.

Pre-op is set for December 1, 2010.

Surgery is set for December 17, 2010.

No, going through one surgery does not make it easier to go through a second surgery.

I am terrified. I have lots of little fears and ‘what ifs’ as to things that could go wrong. That never changes.

And now I’m faced with having to possibly have no choice in taking a mood stabiliser, because I may have to go on hormonal treatment again after this second surgery. I don’t want to be more unstable than I already am, but I might have to go through it anyway (re: trying out the lamictal) - Just In Case surgery comes along and says ’sorry, had to take an ovary’ or ’sorry, killed the ovary by accident’ or ‘I don’t want you menstruating for three months post-op’. Any of those scenarios could happen. And I will need to be on mood stabilisers already -stuff that has been tried and trusted by the time of surgery - already in my system - so the synthetic hormone therapy doesn’t make me whacked and seriously With A Plan suicidal like it did back in 2007.

There is just too much on my emotional plate.

Too much.

Too much.

I should start noting my mental state here. I’ve been seeing a psychologist, and I saw a psychiatrist on September 14. Both think I may be bi-polar, but they do not agree on which type of bi-polar I am.

The psychiatrist gave me a prescription for abilify, but I refused to take it. I asked for and got Lamictal, instead. I still haven’t taken it, though. I am afraid of more side effects. I’m done with more and more mental stuff going wrong with me.

I’ll restate what I said in my previous entry -
Because I’ve not really enjoyed a pain-free or sick-free or allergy-reaction-free day in about seven weeks, I have hit my breaking point emotionally.

I’ve already been wrestling with what I call ‘dangerous depression’ since the end of July.

Well, it’s getting louder in the head, and more externally vocalised.

I went with my husband to a Victorian-era home showing that happens every year in our city. There were eight homes on the bill to walk through. I did not enjoy it this year. It was painful to move. My low back pain crept back in to flare with the trapped nerve in the shoulder, every time I had to climb stairs, or really move at all. And I was still in pain from one visit to the gym last Thursday.

I was super depressed.

I guess it doesn’t help that I’ve been on Soma (muscle relaxer) for two weeks, and I know from experience that it adds to my depression. I have not had a dose of it today and will refrain from taking any more of it.

After the home showing, there was the annual parking lot sale over at the famous tiki bar in town, so we went on over.
I immediately went for the booze. First time in 51 days that I got absolutely full on drunk. My husband had gone off to his sacred game night, leaving me in the company of friends still at the tiki bar. I was still going when his game session got out around 10pm. He picked me up and took my sorry ass home. Thankfully, no tears or puke or hangover this time. I drank lots and lots of water, thanks to a very attentive bartender, and was a good girl and drank lots of water when I got home, and took vitamins and advil.

I remain dangerously depressed.

Today at work, while rocking a child at naptime, I got stabbing right side ovarian pain that lasted for about five minutes. It went away until now. I’m just sitting on the couch, typing, and the ovary is pulsing a low stabbing pain. Today is Day 10 of the new cycle, so I guess it’s mittelschmerz, which usually happens at Day 8 of the cycle, but has been off by a day or three for a few months, sometimes not happening at all. I blame it on the endometriomas on both ovaries.

I bicycled home from work in 95°F heat - thankfully the ovary did not stab me on the ride home.
But I am wiped out after spending some time in the outdoors at work today. Ugh.

So this mental health thing. The meds. I’m so tired of meds. Today I started a detox diet - the one I tried to start back in July or August and didn’t keep up with. So I started it over today. Lots of supplemental pills to take with every meal.
And then either tonight or sometime this week, I might begin taking the Lamictal. I’m terrified of it. Read all the horrific side effects here. If you think that looks bad, read the side effects for Abilify, which is what the psychologist originally wanted me on and I said no way.

Now, let me tell you again what I’ve said before. I have been going through what I call dangerous depression since the end of July, 2010, because of all my pain conditions and reactions to medications.

This is also known as, yes I will spell it out and face up to it: suicidal ideation.

I have wrestled with suicidal ideation for much of my life, so this is nothing new. The frequency is what is worrying me.

But look here, if I take Lamictal or Abilify, the warning is basically the same:

Patients, their caregivers, and families should be counseled that AEDs, including LAMICTAL, may increase the risk of suicidal thoughts and behavior and should be advised of the need to be alert for the emergence or worsening of symptoms of depression, any unusual changes in mood or behavior, or the emergence of suicidal thoughts, behavior, or thoughts about self-harm. Behaviors of concern should be reported immediately to healthcare providers.

Why would I want to take a drug that will make me MORE suicidal than I already am?

I already went down that road once, with SSRIs (Paxil), back in 2000.

Honestly, I probably won’t take the medication. I’ll get my diagnosis officially recorded as bi-polar something and then I’ll manage it myself. I’ve lived this long…