Recovery

I’ve been home for a week and am recovering well. Thanks to all my friends far and near, IRL and on the internet who sent positive thoughts and prayers my way!

Surgery went as planned with no complications. The surgeon made only four small incisions to perform to a laparoscopic low anterior resection. The largest incision goes through my belly button and is just over an inch long. Through this vertical incision he was able to remove my sigmoid colon and a portion of the rectum: 10 inches in all. He also removed my appendix, which was a surprise to me since there were no issues with my healthy appendix. The surgeon explained that it was a prudent precaution since I had already had two abdominal surgeries and it would best for me not to have another anytime soon.

I was helped up to walk around the nurse’s station the evening of the surgery, and was encouraged to get up and walk with every daytime shift change. I only needed help the first couple times until all the anesthetic had worn off and I was steadier on my feet.

My pain from the surgery was not as bad as I expected. I was surprised that my abdominal muscles weren’t as sore as they were after my laparoscopic hysterectomy, and getting in and out of bed wasn’t as difficult as I remembered. It just felt like I had some average menstrual cramps. I did make use of the Dilaudid pain pump a few times that first day and evening, but discontinued it by the next day.

The main reason why I stopped using the Dilaudid was because I started having bad headaches and nausea. At first the nurses suggested that was caused by the anesthesia clearing by body, but as the headache and nausea persisted I started being told it may be side effects from the Dilaudid. Whatever the cause, I was regularly asking for the anti-nausea drugs and anything at all they could give me for the terrible headache. By Thursday night, I was sick a couple times and feeling my worst.

While it’s possible that the nurses were correct about the cause of my headache and nausea, I also suspect that my lack of any solid food contributed to my problems. I had been on clear liquids only the day before surgery. The day of surgery I was instructed to drink a small, clear Ensure at 3:30 AM, but was otherwise NPO (nothing by mouth); I wasn’t even allowed ice chips that evening.  On Thursday my meals were all clear liquids. Is it any wonder I was feeling so awful by that time? On Thursday night I dreamed about food: big, green salads, and toast with peanut butter. Nom!

Luckily they brought me solid food on my Friday breakfast tray. I was so happy to eat cream of wheat, scrambled eggs, and toast! Once I got real food, it seemed my recovery accelerated. I was walking the floor several times a day, my vitals were great, and my pain-killer use was orally administered Hydrocodone just a couple of times a day. The doctor even suggested that if I wanted to go home late Friday instead of waiting for Saturday that I could do so, but I declined. My arrangements for getting picked up had been made for Saturday and I just couldn’t switch them. I enjoyed a shower Friday afternoon and was packed up and ready to go Saturday morning.

My sister drove my car to pick me up late Saturday morning and I was back home by noon. Sister has been my care taker for the past week, and that deserves a whole different post.

The only bad experience I had in hospital was with a roommate who was brought in very early Thursday morning. I’m not sure why my room was chosen as the one to get a new admit sent up from the ER, but it was a bad decision for a couple of reasons. That was my first night post-op, and it was a decidedly unfun experience to be woken up at 1 AM as they readied the other bed.

The other patient was an elderly woman who had fallen and broken her hip. She was in a lot of pain and also very distressed, so she was quite vocal. I tried hard to remind myself to be compassionate, but I also regretted forgetting to bring my sleep mask. At least I could drown out most of her moaning and loud talk with my headphones. My doctor wasn’t happy to find out that I had such a loud roommate when he visited me on Thursday. I didn’t even have to say anything specific, just respond that I hadn’t slept well when he asked. He picked up immediately on the problem.

On Thursday afternoon they took the woman away to surgery and put her in the room next door when she was returned to the floor. I felt very bad for her discomfort and situation, but was glad I wasn’t going to have to deal with her or racist husband anymore. (The husband made pretty loud comments about the apparent race of the nurses and assistants more than once. Ugh!)

Countdown

Tomorrow I’m being picked up at 4 AM and heading to the hospital for surgery. Today has been all about prep: cleaning the house, doing laundry, consuming nothing but clear liquids, and taking precautionary antibiotics. Oh, and there was that other type of prep, too. (Yeah. Eww. TMI.)

Over the past month I’ve asked myself if this is really necessary. Do I really need to have a bowel resection for the repeated bouts of diverticulitis or do I have other choices? Although it’s scary to think about having my abdomen opened up (again!) and dealing with the recovery, I still think it’s my best option.

I’ve been doing everything I’m advised to do to avoid yet another bout of diverticulitis, but it keeps happening over and over (and over and over) again. Surgery may seem like a drastic measure, but so is bombing my body multiple times a year with strong antibiotics. And repeatedly missing work at unpredictable intervals due to the pain and fatigue. And not knowing if I’ll be fit to travel for a scheduled business or pleasure trip. And not being able to eat wholesome food and stick to an exercise regime due to getting ill over and over (and over and over) again.

There are no guarantees that surgical intervention will work, but I’ve talked with a few other people who had this surgery and they are doing just fine years later.

Pretty soon I’ll be taking my first shower with the special cleansing wash, putting on freshly laundered PJs, and slipping into bed on freshly laundered sheets. I have one more round of preventative antibiotic tablets to take, as well as a single dose of gabapentin. (Why I need gapapentin, I’m not sure, but it’s prescribed for me, so I’m taking it.)

My alarm is set for 3 AM tomorrow, and I’ll get up and take another shower with the cleansing wash, put on freshly laundered, loose clothing, and head out the door. I expect to be back home on Saturday if all goes well. Wish me luck?

Here we go again

Was my “rumbly tummy” that I experienced a few weeks ago some sort of early warning of what was to come? Maybe so.

I’m dealing with yet another case of diverticulitis. This the fourth case I’ve had in the past year: April 2015, July 2015, and December 2015 were the earlier ones. I knew for sure it was diverticulitis when I kept waking up in pain last Monday night. Luckily, I have plenty of hydrocodone on hand from the last bouts.

When I saw the nurse practitioner Tuesday afternoon and got the diagnosis, I cried. I’m so tired of this. I do everything I’m supposed to do: eat lots of fresh and fibrous veggies, fruit, and whole grains, drink lots of water, and exercise. The last bit had been curtailed due to my December surgery, but I was getting back into hiking again and taking a yoga class. I had just made a yummy batch of banana muffins with oatmeal and walnuts the Sunday before, and here I was unable to eat them.

I know the drill so well by now. Liquids only for the first 24 to 48 hours. I had made sure that Tuesday to consume only water, lemonade, and black coffee. (Guidance on whether coffee is OK is mixed, but it’s mainly the caffeine that is the issue, and I drink half-decaffeinated coffee at home.) On that first day, I went to the hospital lab for my blood draw, then picked up the antibiotics and started taking them.

There are always two antibiotics for some reason. There is some variation in what can be prescribed for the one, but there is always Flagyl. Always. It’s a horrible drug, and is very hard to take three times a day because it makes me nauseated. I can’t tell if the bouts of nausea that sometimes wake me up at night are from the Flagyl or the diverticulitis, but does it really matter?

On the second day, I vomited my meds in the morning. I simply could not keep the evil Flagyl in my stomach while consuming only liquids, so I nibbled on a piece of baguette I had left over from the weekend. I rarely keep food like that in the house since I don’t eat it on a regular basis, but luckily I had entertained the weekend before and had half a loaf left. I had to go back to the doctor’s office to see the doctor and get confirmation of my diagnosis based on my bloodwork. As if there was any doubt.

The internal medicine doctor was almost chipper and friendly as she showed me my lab results (elevated white count and inflammation markers, of course) and she prescribed an anti-nausea med for me. I’ve taken it a few times, but it knocks me out and makes me pretty loopy, so it’s not something I can take regularly, unfortunately.

This particular bout seems worse than the last one in December. Or maybe I’m just still not fully recovered and not up to fighting it as hard. For whatever reason, I don’t feel like I’m healing as quickly as I used to. I still have pain occasionally, especially with certain movements. I’ll turn in my sleep and wake from the pain I’ve caused myself. Or I’ll wake up with nausea and lay there hoping it will pass so I don’t get sick on the bedroom carpet. This morning I drank two cups of peppermint tea before I could even think about trying to put anything (even toast) in my stomach. Then there are the bathroom issues. *sigh*

The doctor asked if I had seen a specialist, and I noted that, ironically, I had a follow up appointment scheduled with the gastroenterologist at the end of the month. We should have a lot to talk about. I can’t take this anymore. I see another abdominal surgery in my future, but first I need to get this infection gone.

Life takes a sharp left turn

Ten days ago I was admitted to the local hospital with diverticulitis. I had spent a miserable night prior to that popping hydrocodone every four hours for the pain. My friend/neighbor took me to the ER the next morning and stayed with me while they worked me up and gave me lovely Dilaudid for the pain.

I was surprised at being admitted, but the doctor said I had a diverticular abscess. That first day was all about pain management and weird vitals. My blood pressure was very low (perhaps from the Dilaudid?) and my temperature was creeping upwards. I spent a lot of time sleeping.

By the second day the pain was minimal and my vitals had evened out towards normal, but I had an unstoppable headache and nausea. Both days I was on nothing but clear liquids, and I think that had a lot to do with my nausea and headache. Strong iV antibiotics + no food are not a good combination for me.

I also slept a lot on the second day, but was visited by the hospitalist and one of the surgeons. Surgeon talked about seeing something on the CT scan that was some sort of mass (maybe this was what they thought was the abscess?), but that I shouldn’t worry. He suggested it could be an ovarian cyst and that an ultrasound had been ordered for the next day. Since I already knew I had an ovarian cyst on the left ovary that had been imaged earlier in the year and declared unremarkable, I didn’t think much about it.

On day three a different surgeon came in and told me I could be put back on regular food (hallelujah!), although the gastroenterologist stopped by and said he preferred I stay on mostly clear liquids for a while (boo!). Apparently the surgeon won because the floor nurse came in shortly afterwards with some toast and honey. I could have hugged and kissed her.

I had my ultrasound on day three, too, and in the afternoon the hospitalist came in and said that they were just waiting for a gynecological consult. He said it was likely I would stay another night. At this point, I was off IV fluids (although they left the needle in my arm “just in case”) and was switched to oral antibiotics. I was walking the hallways regularly, eating real food (chicken! carrots! cake!), and helping my roommate with little things since I was so bored.

My gynecologist showed up at 8 PM that evening apologizing for being so late. Apparently the hospital hadn’t contacted her at the correct number, causing a delay. She went over the ultrasound with me and laid out the concerns succinctly.

That unremarkable cyst had ballooned in size in just a few months. In late April it had been a simple 2 cm cyst. It was now 9.9 cm and was considered “complex.” My CA125 was above the normal range, but not significantly. My c-reactive protein was very high, but that could have been because of the diverticulitis. (Later, it also occurred to me that this marker of inflammation could be high because I have I.C.E. Syndrome in my right eye, too.) The ultrasound report indicated that it was likely not a malignancy, but there was still a chance.

She presented me with two options: I could stay in the local hospital and have the ovary and cyst removed surgically. However, there was no gynecologic oncologist on staff at this particular hospital. The second option was to be released to consult with a gynecologic oncologist about an hour away who would do the surgery and evaluate if I needed further treatment. I chose the latter.

After leaving the hospital at 10 PM, I fell into an exhausted sleep at home. The next day I started putting my disrupted life back together (picking up the dog from the kind woman who boarded her quickly after I was admitted to the hospital, getting prescriptions filled, etc) and rested. I received a call from the gynecologic oncologist and set an appointment for the following week.

My second night at home I barely slept. I was worried and anxious. I kept thinking of things I needed to do to prepare for a surgery, because that was clearly in my near future. I needed to arrange for household help, dog care, short term disability from work. I realized I have no advanced directive or a will in place, either.

I logged into work after perhaps three hours of sleep and started making lists and notes of things that would need to be off-loaded. I arranged to speak with my boss and team lead, and tearfully told them what was going on. Since I had already missed two days of work they knew I had been hospitalized and why, but it was confusing to have things turn from “I have (yet another!) case of diverticulitis” to “There’s a chance I have ovarian cancer.”

Because I work for an awesome company with a fantastic team, I was fully supported to take time off as soon as possible. Of the few days I worked last week I spent most of the time on organizing projects to hand off to others.

Yesterday, I saw the gynecologic oncologist. I like him and he was straightforward, kind, and treated me as an intelligent human being. He agreed that the chances of this being a malignancy are low, but he explained to me what they would do if the pathologist indicates it is. In case of malignancy, he will remove both ovaries, the uterus, several lymph nodes, and some fatty abdominal tissue. But if the pathologist finds no indications of malignancy, he only has to remove the one ovary. I have two other options while I’m in surgery: have both ovaries removed, but keep the uterus; or, have both ovaries and the uterus removed. Either of those two options would put me in immediate menopause, and I’d start hormone replacement right away.

It’s a lot to take in, and I don’t have to decide until just before the surgery date, which will be December. 31. (Yep, I get to spend New Year’s Eve recovering from surgery. Hooray.) Recovery time from the more complete surgery will be longer, but I’m entitled to some generous short term disability, so I’m not worried about that.

That’s the long version.

Here’s the TL/DR: I have a 9.9 cm complex ovarian cyst that needs to be removed. It’s likely not malignant, but I won’t know until I have surgery on December 31 to remove it. I will be out of work for several weeks, and I’m coping pretty well. I have a positive attitude. I have  a bunch of supportive people around me, too. Despite having lived here only one year, I have made some good friends, and have received many offers to provide me with food/meals, help around the house, and companionship. People are awesome.