This Girl Loves People

Janny and I have a new routine going – I drop my kiddos off at my parents’ house and then take Janny out for about three hours.

And our visit together today was glorious!

In the past, driving anywhere with Janny has been challenging. She’s grabbed the steering wheel and/or gear shifter in a mad rage, voluntarily gagged, refused to get out/or in the car, yelled because she didn’t like the music (or whatever), and so on. But today? None of that happened! In fact, Janny was completely pleasant and didn’t have a single complaint the entire trip! She was a perfect angel.

We started off at a sandwich shop, and made quick friends with the two girls working there as we waited for our sandwiches. “I like your tattoo!” She said to one of the workers. To the other worker, she said “Oops, your shirt…” pointing out that her midriff was showing. The girl quickly pulled her shirt down. I was glad the girl laughed about it.

Next we walked next door to Starbucks and got Janny her beloved hot chocolate and me a latte. While waiting for our drinks, Janny eyed a UPS man and quickly ran up to him. She greeted him as if he were her good friend and gave him a hug, which he accepted. Janny gets right to the point with strangers, and asks all the questions she can possibly think of – this man’s name was Todd, he was 53 and his wife Charlene would be getting off work at 4pm. Todd has allergies, but takes medicine so it’s not too terrible.

When Todd’s drink was finished and it was time for him to leave, Janny said goodbye and gave him another hug. He looked at me and said “She’s really made my day.”

We moved to a table outside to eat our sandwiches and enjoy our beverages. Janny’s dexterity is poor, but she managed to keep her sandwich mostly together. Somehow she guzzled her entire water bottle. Another person passed us, and then came back by again. “Good morning!” Janny said brightly. “Good morning!” the man replied. “What’s your name? She asked. The man’s name was Kit. He worked for the city and also got off at 4pm. He didn’t know what he would be having for dinner yet. After a little more conversation, Janny said “Have a nice day!”

We loaded up into the car again and decided to go for a walk. We drove to a great walking place and Janny let me put a hat and some SPF chapstick on her, no problem (usually that’s a fight). We went for a walk, where she commented on various animals she saw and engaged in friendly conversation with me. There were lots of hills, but she powered through it like a champ. And then we met Kenya, a lady walking a little behind us. In just a short while, I learned that Kenya was 36, she had an 18 year old son named Isaiah who was a Senior, oh, and by the way, he doesn’t like loud plane sounds (but who does? Kenya rightly said.). She wasn’t married, and she walks daily. She lives with her aunt. We ended up walking together, three in a row, chatting as if we had known each other for years. Then it was time for Kenya to turn off the trail. Janny told her that she loved her pretty hair, and then Kenya was gone.

Then we did some shopping after that at Sam’s club, and here Janny actually knew the workers on a first name basis. But she didn’t know the shoppers yet! She ran up to one man in the produce section and excitedly said “Hi! Good to see you!” As if she had known the man all her life. In fact, she was so warm in her delivery that I even wondered if she knew the man. The man looked at her, perplexed. Then he looked at me. “Do we know each other?” I laughed, and Janny laughed too. “I guess not!” I replied while gently steering Janny away.

After meeting several other people, we paid for the groceries and unloaded them into the car. On the way home, Janny asked if we could listen to her favorite singer, Carrie Underwood. Her rendition of “How Great Thou Art” came on and Janny and I sang together, at the top of our lungs. She raised her hands in worship and sang with no inhibitions. And it was heavenly.

It’s never been particularly easy for our family that Janny has always loved people the way she does. She doesn’t know how to read social cues, so she’s been known to offend a person or two (or fifty). Additionally, not all people like to be hugged or touched, and Janny is very touchy. Not all people like to be approached by strangers, and not all people can understand what she’s saying either.

And yet… today it dawned on me that people are Janny’s most favorite thing in the whole world. I think I have spent nearly my entire life dreading what would happen when Janny asked yet another middle-aged lady who clearly wasn’t pregnant when the baby was due. Or the man with weird hair why his hair looks girly. But today I realized that people were good for Janny, and Janny was good for them, even if there were awkward/uncomfortable moments from time to time. In a day and age when everyone is glued to their phones, it’s a breath of fresh air to see Janny make conversation with stangers (soon to be best friends). Making friends with a perfect stranger has become a lost art. Janny has mastered few things in her lifetime – but this is one thing that she’s mastered. And I’m taking notes.

1 Comment

Filed under Uncategorized

The Kids And Their Shenanigans

The kids are ages 5 and 6 and there is something magical about these ages.

Our fence blew over recently from a wind storm, and after we got it replaced the kids had a blast building shelters with the old fence boards. Well, really it was just Josh who did the building, and Rachel who did the dancing and singing nearby as Josh worked. I told the hubs “Looks like we’ve got one worker and one non-worker.” Good thing neither one seems to mind.

Rachel continues to be a clothes fanatic. Eight months before her birthday, she let me know that she really wanted me to wear a dress to her party, and wanted my solemn promise that I would comply. (I didn’t, by the way.) She plans her outfits out the night before each day and has a conniption if Mom says her outfit is not weather appropriate (which happens routinely). The hubs and I are not fashionable in any sense of the word, and let’s face it – a major plus to becoming a nurse was wearing scrubs and not having to suffer through putting outfits together. Maybe when she gets older she can help her old unfashionable Mother with clothes shopping.

And Josh is still crazy obsessed with insects of all kinds…. I think this week he’s into praying mantises. He was into spiders for what felt like decades (ahem- he would have interjected by now that spiders are not insects, but actually arachnids) and he drew exactly 4,836,900 life-like drawings of spiders, which continue to be scattered throughout the far outer regions of the house. He knows all the different parts of each insect and is even taking an online bug class right now. He build insects out of anything he can get his hands on. The kid is crazy creative, and is about a million times less mechanically challenged than his Mother. Sometimes I wonder if he’ll be romping around South America some day with a bug net in one hand and a microscope in his backpack.

Rachel broke her arm on the trampoline about a month ago- both the radius and ulna. She’s on her second cast. She handles pain pretty well and her cast has been a tiny blip on the radar. It hasn’t slowed her down at all! I’m pretty sure she views her cast as one of her clothing accessories. It definitely helped that her first cast was hot pink and that her current cast is purple. I’m thankful that she still hasn’t figured out that her cast is pretty much a weapon…. she could bust a hole through a wall with that thing! In 2.5 weeks she’ll get it taken off and the whole ordeal will be over. That will definitely make showering much easier!

Well, happy to have gotten a few memories in the book for today. Nice to get something productive done while not sleeping last night!

Leave a comment

Filed under Uncategorized

The Year That Surprised Me

A whole year since I’ve been to this place? Sheesh. Clearly me and writing haven’t been getting along. For months, it would seem.

Thanksgiving looms in the near future. The apples have been boiled down into a cinnamon-laden applesauce. The triple berry pie sits cooling on the stovetop. The rolls have been shaped, baked and bagged. The gingerbread house pieces are wrapped up and ready to be built. And the excitement is building.

I’m grateful, and not just because my to-do list has been nearly completely checked off for Thanksgiving this year.

This was supposed to be a really hard year. In fact, it has been– for most. Back in May, there were (and still are) unknowns with my husband’s employer, so we prayerfully considered it and I went back to work. Full time, night shift. It was a big adjustment for me.

I kept up the homeschooling, because we were loving it as a family. I wasn’t sure how it would go… but God has been merciful and school has gone really well. My husband picked up all the math and read-alouds, and the occasional hand writing assignment.

My husband has been working from home since March, and it has been terrific having him here. Despite me being gone three nights a week, our family feels connected, emotionally healthy and happy.

The kids have been occupied with books, art projects (they are ART FANATICS, which continues to surprise us), building shelters outside, riding their scooters, cooking projects, digging holes, studying insects… with just being kids. Sometimes I want to freeze them in time.

Tonight, the kids are showered, in their pj’s and playing in the living room while my husband reads Little House on the Prairie to them. This family time, getting to be together so much, is a gift. For all the hardships that have come our way, I’m thankful for this family the Lord has given me.

If there’s anything I’ve learned in this life, it’s that His mercies are new every morning.

Happy Thanksgiving!

Leave a comment

Filed under Uncategorized

A Small Delight in the Midst of Hard

It’s been a rough, rough year for my parents. My disabled sister, Janny, has been combative and angry — a lot. There’s aren’t many places they can take her these days, including church. There aren’t many people that can come over. She no longer will agree to go to her day program, giving my parents very little time together. This reality that my parents have been living through these past 34 years might be crushing for some, but I have watched them persevere, day after day.

But how I love that Janny-girl. I’ve been wracking my brain, trying to figure out how I can help my parents out more. We live over an hour away from each other, and Janny often yells at my kids– making them deathly afraid of her. Between that and homeschooling my oldest, there aren’t really any times that I can get away by myself, unless it’s a weekend. There were limited options, but praying was something I could do. I enlisted my women’s Bible study– as well as our Thursday group– to pray over Janny, my parents, and Thanksgiving in particular.

Well, God answered our prayers. Thanksgiving was AWESOME. Janny screamed a little, but not at my kids. In fact, she and my kids were near each other for a good portion of the evening. She gave my kids hugs, and they didn’t shutter. In fact, they smiled.

How I long to be closer to them. To be present more, to help fill in the gaps. To allow my parents to get to church. I don’t know how that might happen. This has been a hardship that has gone on for a long time. But I do know that God hears my prayers. He is aware. He is working.

So for today, I’m thankful for yesterday. 6 hours of family and fun. Our family all getting to be together.

So it is with a thankful heart that I wish you a happy Thanksgiving from our family to yours!



Filed under Uncategorized

Six Month Catch Up

It’s been six months since I’ve come to this dusty place. What’s my blog address again? I had to look up my password too.

I have thought of blogging at least a couple hundred of times in the past months. Ideas form and begin to take shape, and then they evaporate. Do I have a big desire to get that idea down? I guess the answer is no.

It’s been over a year since my big endometriosis surgery. I really wanted to blog at the one year mark, but we were overseas and life was too hectic. The outcome? I’m doing really well. I have NO pain! I’m still on the antidepressant to help with sleep, but I plan to slowly wean off of it soon and see how it goes. About two months ago I started being able to fall asleep at night more consistently. I still have sleep issues, and the progress is very slow, but at least there is progress. My surgeon was Dr. Mosbrucker in Gig Harbor, WA, and her general surgeon (who did my bowel resections and who put in my chest tube) was Dr. Linda Pai. If you’ve got severe endometriosis and no one has been able to help you, go see Dr. Mosbrucker. My sister also flew up to have her do her latest endo surgery, and she is doing WAY better.

Speaking of which, thanks to excellent health these days, I will be home schooling Josh starting next week! He’ll be starting kindergarten. He’ll also attend some enrichment classes two days a week with other kids. We’ve got our curriculum almost ready to go and I feel very excited to start. I hope it is a good fit for Josh and for our family. Josh is reading, still hates to go places, and has made some improvement over the summer with his sound sensitivity issue (hates loud or sustained noise). He lives and breathes Legos. My husband tells me that they won’t be going away anytime soon…

Rachel is almost 4 and she’ll be going to preschool a few mornings a week starting in September. She can’t wait, and has her unicorn backpack all ready to go. She is still in trouble all the time. I thought I saw some progress in her a few days ago, but then we’ve just come through three days of sheer three year old psychosis. Even though she’s crazy right now, my girl will start laughing in the middle of a screaming episode. She doesn’t take anything too personally. I love that about her.

The hubs and I will have tied the knot ten years ago in just a few short hours. As the years go by, marriage just gets better and better. Love my guy; how he continually pursues the Lord and me. He is so obviously for me. Thankful for what a blessing he is.

We took a 3 week trip with the kids to Papua New Guinea this summer which was wonderful– the highlight of the year! We also went on a 3 night camping trip up to Tahoe. That was pretty awesome, except that my sister got into a car accident (not her fault) and we got a ticket from the park ranger because there was a miscommunication in our group and food got left out on the tables (which is a big no-no due to bears). We’ve enjoyed lots of swimming and just easy-going summer days… I think I will miss this season once it’s over! I’m so thankful I can be home with the kids and yet still get to out to work here and there.

Here are a few pictures from the past few months. 🙂





1 Comment

Filed under Endometriosis


This is the story of an exasperated mother.

“Little Rachel,” (a title given by her father when she was just days old) has been extremely mischievous today. She’s almost 3.5, but today I think she regressed back to a 1.5 year old. We have those days (weeks… months) sometimes.

This morning while we were at my parents’, we celebrated Valentine’s day early. Rachel received (among other things) a heart container with 6 chocolates in it. Normally I would dole something like that out in small quantities as a reward for finishing most of her dinner. Well… Rachel disappeared for a while and when I found her I discovered that she had opened up her chocolates and eaten them all! I was actually surprised she was able to open it by herself.

A few hours later, she was caught climbing on the counter and eating cookies. Little Rachel!

A little after that I noticed that her pants and shirt were all wet. Was it water or potty? After a quick sniff I quickly determined that it was most definitely not water. I discovered that she had taken off her pull up and put it back on– inside out. As I’m sure you can imagine, inside out pull-ups absorb nothing. (But hopefully you’ll never need to know that information.)

Once we were back home, I was loading up the dishwasher and realized that I hadn’t seen Rachel in about fifteen minutes. I found her– taking a “dry” shower in the tub, with no clothes on, and shampoo all over her (dry) hair! I needed to leave for work very soon, but rushed her through a real bath in order to get the shampoo out of her hair.

About ten minutes after that, I was about to be on my way out the door for work when I saw her standing on an upside down laundry basket, getting into the snack cabinet. I didn’t think she had gotten into anything just yet when I got a whiff of chocolate from her breath. Here we go again. “Rachel, have you been eating (more) chocolate?” She finally confessed: “I eat M&M’s.” Oh brother. I discovered I couldn’t find the M&M’s. “Where are the M&M&s, Rachel? “They in my room. I go get them!”

Hopefully we’ve avoided a midnight snack of M&M’s now that they’re out of her room. 🙄

That little girl keeps me on my toes! I think my mother got her wish when she frequently told me that she hoped I had a little girl just like me someday.

It’s payback time.

Leave a comment

Filed under Uncategorized

6 Months Post-Op Update

I was on a run earlier today and it dawned on me: My surgery was 6 months ago today! If I had one word to summarize the entire experience, I would have to claim that I actually needed two words: Treacherous and grace. Treacherous, because (where do I even begin?) this has been the hardest six months of my life. Trust me friends, any time you think you might need to be admitted to the hospital for extreme anxiety and insomnia, nearing a possible mental breakdown – well, that’s not even close to a good time. It was pretty horrible, and for weeks on end I would bawl my eyes out at 3, 4, or 5 am, begging the Lord to please ease the anxiety and to let me sleep. There were a few times when I didn’t sleep at all, and several nights were I only slept a couple of hours.

The grace part– also playing a huge role in this whole ordeal– came frequently. The days following those awful nights my parents or my mother in law often came and helped me – I was too anxious to rest during the day– but they would babysit so that I could get a run in or just “be” with me to help me keep my spirits up. It was a tremendous help and I am grateful that we live near our family!

After trying every supplement out there to help increase my estrogen levels or to ward off anxiety (none of which helped very much), I ended up on my last resort choice: a low dose antidepressant. I really, really, really wanted to avoid going on one, just because everyone says that getting off of them is no picnic. And when you’re anxious already, the thought of being even MORE anxious (while getting off the antidepressant) feels impossible. But I started the antidepressant. Around that time I learned that I also needed a second minor surgery for a complication I had had with the first surgery. Fear was welling up in me as I thought about being given medications in the OR that didn’t agree with me or that caused me to panic. By God’s grace, on the day of my second surgery, the antidepressant had already started working (it takes about 6 weeks to be working completely) and I had NO anxiety that day!

The recovery from the second surgery was a breeze, and if I recall correctly, I think I took Motrin once post-op. One weird thing that happened on the day of the surgery was that I developed muscle twitching in my right arm that literally kept me up at night. I had no idea what caused it (my IV hadn’t even been in that arm), but I started taking a multivitamin daily and it went away within two weeks. By that point though, I was wondering if it was ever going to go away.

After six weeks on the antidepressant, I started being able to fall asleep on my own at a reasonable hour. That was great! The antidepressant does have a few side effects though. I’ve noticed that I never cry now. And sometimes, I feel like I would “like” to cry, but no tears come. It’s weird. The dosage is low, so I still feel lots of joy and occasionally some lows too. I’ve heard some people say they feel emotionally “flat” on antidepressants. That’s definitely not how I feel, but I would like to cry sometimes. Crying (within reason) is healthy!

What else? I was unable to work for weeks during this time. Once my sleep normalized and the panic attacks went away I was able to work again. I’ve really enjoyed being back at work! I also cut way back on being involved on the worship team at church. I noticed that my voice quality had totally tanked and that I never slept the night before church. Now that I’m on the antidepressant, I’m just filling in occasionally for our worship leader when he’s out of town. I still seem to sleep horribly the night before, but at least I’m not too nervous to sing and my voice quality has returned.

The last 6 days have been hard. After sleeping great for 6 weeks, I suddenly stopped sleeping well and the anxiety (muted this time around) returned. I’m back on sleep meds for the time being. I’m not sure if it’s from working a lot of late hours at work and getting behind on sleep, or from my exercise slacking off lately, or if it has something to do with my cycle (which is largely a total mystery to me now) or what? It’s been frustrating. But… God gives grace, and I don’t have to look very hard to see it. I’ve been more diligent to get my exercise in every day and that seems to help some.

During this time, I have been so grateful for my husband and children. My husband has been incredibly supportive. I still can’t sleep in our bed at night, which is a real bummer. This trial has brought us together, and our communication has become even better. So thankful for our marriage! Also, the kids have brought so much joy to my heart. And frankly, having to get up and take care of them at 6:30 am every morning has been hard but it’s been a life saver also, because it got my focus off of me and my misery rather quickly. Kids have a lot of needs, and for that I am grateful!

So that’s my long saga about the last 6 months! If I had any advice to give (not that anyone’s asking), I would say think twice about having your ovaries or uterus removed, unless you plan to take estrogen. I know women who have been thrown in menopause from just having one ovary or just their uterus removed. As far as I know, there are two vessels that supply blood to each ovary, and when the uterus is removed, one of those vessels is removed. This means that there is less blood supply to the ovary after surgery, and it can cause either a sudden menopause or an earlier-than-expected menopause, often within 5 years after surgery. If you have severe endometriosis like me, or if you had breast cancer or issues with blood clots, estrogen replacement is not an option.

On that somber note, here’s a few photos from the past couple of months. 🙂


Filed under Uncategorized

The Good, the Bad, The Ugly: 10 Weeks Post-Op.

This is literally the third time I have sat down to write a post-op update from my hysterectomy/endometriosis excision procedure almost 11 weeks ago. Every time I sat down to blog I would start typing and so much of it was just bad news that I either stopped, or (more likely) was interrupted of any deeper thought by small children. 😀 There hasn’t been a ton of good news to report. (Okay… it has been flat out depressing at times!) But there were also many answered prayers and internal growth I recognized in light of my situation that I’m back to take a stab at it again today.

The truth is, I am still in the midst of this hard situation. I didn’t recognize it at first, but my body was thrown into menopause, probably immediately after my surgery. (I was left with 1/2 an ovary post-op.) I discovered 10 days after my surgery that the meds my surgeon had had me on were masking the menopause symptoms. Once I stopped the meds, I found myself with extreme insomnia, anxiety (panic, really), and irritability. My body would shift from hot to cold all night long as I felt like I was having heart attack after heart attack. During the day, my heart was pounding all the time. I would cry with despair over how majorly “off” I was feeling. I got an estrodial level drawn about 2.5 weeks post op and it was 34. Basically, this showed that my ovary was doing a tiny bit, but not enough. My Dr didn’t want me to start on estrogen due to my history of severe endo, so she recommended a low-dose antidepressant, which would basically mask the menopause symptoms.

I was very fearful of not ever being able to get off of the antidepressant (what if my ovary never recovers, etc?) so instead I headed to the health food store and got on black cohosh and some other things that helped boost estrogen levels. This helped a lot, but KILLED my stomach. I actually had to start on Prilosec to help with the bad stomach pain and heartburn. And even still, most days my stomach just flat out hurts, despite also taking Zantac and drinking aloe vera juice. And to this day, I have been on different supplements, trying out different dosages, trying to see what helps the best. But no matter the supplement or dosage, I’ll have a few good days and sleep well and then I’ll have a run of anxious days followed by little sleep. It’s been very hard, to say the least.

Also, because of all the anxiety and insomnia, I have been sleeping on a memory foam mattress in the living room since I got home from the hospital. Crazy, right?! Some nights I can sleep on the floor in our bedroom, but most nights not. I guess this is the life of an insomniac who’s anxious? I’ve had some issues with sleep in the past due to night shift work, but I’ve never felt stressed about it. It is quite the different story today. At this moment in time I am currently dreading bedtime.

But that’s not all! To summarize the rest of life these past weeks, I’ve also had: 4 scary hemorrhages (three of which were in public places, of course!), painful bladder syndrome, and cellulitis. I could write a blog post for each of those other topics, but I won’t. 🙂 I’m happy to report that all of these complications are resolved now!

In the midst of these (quite literally) crazy post-op days, I have to remember the good, and the things that are improving! First of all, I have no more shoulder pain! Before my surgery, shoulder pain had been my companion for 17 months. And I can suck my belly in without pain, also! I can lean forward while sitting and not wince in pain- which is great news. I can also eat a little bit of gluten, which expands my diet options quite a bit. Lastly, I can run most days without pain. Exercise has been my friend these past weeks, which helps the anxiety a lot.

And there have been many times that I have been so encouraged by the Lord. A couple of weeks ago, I was unable to sleep and in full-blown panic about my situation. Sometime around 2:30 am, I was on my knees, crying out to God. I didn’t even know what to pray except “HELP!” Right after that, I heard a sound coming from Josh’s room. Was that sneezing? It was. Since that was highly unusual for him, I was immediately distracted from my current distress and went into his room to investigate. He was feverish with a cold. I got him up for water, a little snack, tylenol and then rocked him for a while before putting him back to bed. The rocking calmed me down and I was able to fall asleep not long after that. God had answered my prayer immediately, but not in a way I could have ever have imagined.

In all of this, I have found that being driven to point when I am utterly helpless, where I am crying out to God with my burden – has been nothing short of amazing, because I not only know that God will hear my cries and help me, but I expect it. It has helped to further build up my trust in my Savior, and honestly friends… although this experience has been flat out ugly at times, it has been a mountaintop experience for me.

There is nothing better than knowing that God holds your future in His hands, and that He is there to hold you through it.

Some of the verses that have been running through my head during these past ten weeks, helping to keep me from despair:

“Even to your old age and gray hair I am He, I am He who will sustain you. I have made you and will sustain you.” Isaiah 46:4

“We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed.” 2 Cor. 4:8-9

“Why, my soul, are you downcast? Why so disturbed within me? Put your hope in God, for I will yet praise Him, my Savior and my God.” Psalm 43:5

“I rise before dawn and cry for help; I have put my hope in your Word.” Psalm 119:147

“… We also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope.” Romans 5:3-4

Please keep me in your prayers. I need wisdom, and I desperately need my ovary to heal up and start working again!


Filed under Endometriosis, menopause

Endometriosis Surgery – Check!

Where to begin? The past two weeks have been insane. Chalk full of unexpected blessings, changes, and trauma.

I flew to Gig Harbor, WA almost 2 weeks ago to have surgery by Dr. Mosbrucker, an endometriosis specialist, and Dr. Pai, a general surgeon she works with. My Mom accompanied me for the entire trip while my hubby took time off of work to be with the kids.

The surgery was expected to be 3 hours long. I was in pre-op, getting my IV placed by one of the nurses, when the anesthesiologist came in and introduced herself. She began to tell me, in her kind, nonchalant way, that I would be having the largest endotracheal tube placed down my throat, and it would be placed very deep into my left bronchial, in order to keep mainly just my left lung inflated while they operated on my diaphragm on the right side. She continued on to say, that, oh by the way, I would also need an arterial lined placed for the surgery (this was to be placed after I was asleep, but before the surgery started), and also a second IV. I didn’t have a huge amount of time to process this info, thankfully. I texted my hubby that I loved him, I gave my Mom a hug, and to the OR I went.

The bruise left over from my arterial line. Sometimes I think my insides are healing up faster than this yucky bruise.

Ironically, in the weeks leading up to my surgery, I had told a handful of people that if I made it out of surgery without a chest tube, I’d be happy. After all, chest tubes are super painful. And not only that, but it would mean that the surgeon didn’t have to perform a full resection on my diaphragm, leaving my thoracic cavity untouched. Ultimately, it would mean that the endometriosis hadn’t grown all the way through my diaphragm, and that the surgeon had been able to essentially “scrape” it off instead of cutting it out.

I had also hoped that I was completely wrong about all the symptoms I had been having up to that point. I had hoped that perhaps my endo wasn’t all that bad, and that maybe my surgeon could save my ovaries and uterus. I made a point to let her know that I was just fine with not having a hysterectomy, if she thought things were good enough to save it all. She said she would use her best judgement, and I was fine with leaving the decision with her.

Let’s just have a good laugh right now about how delusional I was about the status of my endometriosis. Let’s just get the details out there: My surgery was seven hours long, not 3. I had FULL thickness endo growing through my diaphragm. I did indeed wake up with a chest tube and resection of my diaphragm. My surgeon said I had more endo on my diaphragm THAN SHE HAD EVER SEEN (the good news is that it wasn’t in my thoracic cavity!). I had full thickness endo growing through my small intestine, close to the illeocecal valve, and so therefore had a small bowel resection. I also had endo on my colon, which was removed. I apparently had endo all over the place, so my surgeon made the decision to do the hysterectomy. There is one bright spot – the better looking ovary, my left ovary, was covered with a lot of endo, so she literally cut about half of my ovary out and sutured it back together. Apparently ovaries regenerate like livers, so it’s supposed to grow back. Therefore, I get to keep an ovary and do not need hormone replacement therapy.

Instead of staying in the hospital overnight, I wound up in the critical care unit for two nights and then was transferred to the med surg unit for two more nights. My surgeon wouldn’t let me leave Gig Harbor for four more additional nights, so my Mom and I had to book another Airbnb, switch to a later flight, and rent the car for four more days. It was not cheap to do this!

I don’t have a lot to say about the hospital stay except that I flooded my room while taking a shower. Major OOPS! I had put a towel on the floor and didn’t notice that it was covering the drain. All of the sudden I heard my Mom shout from the other side of the door “Emily! There’s water out here!” Enter the nurse, the charge nurse, the nursing aide, and environmental services to clean up all the water outside the bathroom (it was more than an inch deep). I was so mortified that I cried, but the nurse thanked me for giving them some excitement that afternoon.

As far as views from a hospital room goes, I’d say this one was pretty good.

When I finally got out of the hospital, the Airbnb we stayed at was really close to the water and they had a beautiful yard that we got to look at through a sliding glass door. My Mom was a wonderful companion and excellent nurse. She was working on knitting a sweater for my sister, and it was the most complicated pattern ever. But it kept my Mom occupied while I slept, or rested, or sat and watched HGTV with her. I was extremely boring to be around! She kept me fed, helped me get out of bed, talked with me, ran to the store for me, and was just generally great to be around. I can’t thank her enough.

I loved the view!

My Mom working on the sweater while we got some fresh air.

I called my kids and hubby twice a day and we video chatted each time, which was a huge blessing. I was gone from them 10 days, which is just about forever when your kids are little. I missed them so much. (I cried about that too.) My hubby always seemed to be in good spirits and things seemed to be going well with the kids. His Mom came over a few times to help out, and my sisters came as well. One of my sisters brought a meal, which was helpful.

I did end up at the ER a day after I got out of the hospital. I had a sudden migraine occur, and I’ve never had a migraine. After medicating, resting and icing, and with no success– I went to urgent care. After they learned of my major surgery they wouldn’t touch me with a ten foot pole. So we went to the ER where the ER doc insisted on a head CT. I knew they were going to force me into one and I was very prepared to refuse it until I remembered that I had gotten 4 Lovenox injections while in the hospital. And suddenly, a very slow leak or bleed in my brain sounded a tiny bit more plausible. The ER doc told me that if I did have a brain bleed and I refuse the CT scan, I would simply go home and die (I didn’t care for her much). She was pretty pushy, and I felt miserable. So I got the head CT, which ended up looking “perfect.” The nurse taking care of me pushed a med for my migraine way too fast and it gave me a horrible panic attack – my skin suddenly felt hot and I just wanted to jump out of my skin. It was a ROTTEN experience and by far the worst part of the trip. The nurse then gave me some IV Benadryl which helped negate some of the yucky side effects, but not all. I was very, very discouraged when my Mom drove me home from the ER late that night. After everything I had already been through, the whole experience felt traumatic. My ability to handle stressful things was pretty poor.

We did do something fun while in Gig Harbor – we rode on the ferry the afternoon prior to flying home. After going up two flights of stairs I was in pretty major pain, but it was a new experience with beautiful scenery. (I should add that my Mom discovered an elevator on the ferry after that!).

Mom and I on the ferry.

We finally made it home close to 11 pm Friday night. The next day I realized that I had a UTI – thank you hospital foley catheter! I mean, I understand why I had to have it (no one gets up and goes to the bathroom with a chest tube in place), but still, it was frustrating all the same to be back at urgent care, only this time in a different city. And I’m grateful for antibiotics, but I don’t tolerate them very well.

All in all, I had NINE incision sites (my Mom said it looked like I was in a knife fight) – and I have very little pain today. Things seem to be healing up quickly! My abdomen/pelvis feel GREAT. I have had food intolerance only one time so far, and even that it questionable. So – I feel very hopeful for the future!



Filed under Endometriosis

Appt With Endo Specialist

I traveled a week ago to see an endometriosis specialist in Washington. I got up at 4 am and arrived home at 10 pm that same day! Needless to say, it was a very long day, but it was productive and helpful, so that was good.

I met with the general surgeon first. She will be working with the endo surgeon should I have partial or full thickness endo on my bowel (if it’s superficial enough, they can just scrape the endo off). She will be on standby during the surgery. If I do have endo on my bowel and it’s significant, they will have to do a bowel resection. Bowel resections on the colon aren’t as big of a deal, but resections on the small intestine are riskier because the bowel is more narrow and there is more potential for a blockage post-op. Rarely, they have to divert the stool out into an ileostomy for a while before reconnecting the bowel. Based on my symptoms, the general surgeon guessed a 30% likelihood that I had endo on my bowel. She also thought it more likely that it would be on my small intestine rather than the large intestine. Food and I don’t agree most of the time these days, and I’m wondering if it does have to do with the fact that I do have endo on my bowel. I guess we’ll find out.

After that I drove to my next appt with the Endo surgeon. This lady was no-nonsense, and I got the idea that she’s tough as nails in the OR. I liked her though, and I very much got the sense that she was the right person to be seeing for the symptoms I had been having. She did an exam and a couple of ultrasounds. She believes I do have endo on my diaphragm, but her guess is that it’s not full thickness yet (meaning I’m not bleeding into my thoracic/lung cavity. I don’t have shortness of breath and I haven’t coughed up blood (signs that it could be in the thoracic cavity). {On a side note: Despite all that I have been through, I am immensely grateful that it most likely is NOT in my thoracic cavity!} We talked about what a resection of the diaphragm would look like. If the endo is partial thickness, they will cut it away and I’ll have a partial resection. If it’s full thickness, then I’ll have a complete resection and most likely wake up with a chest tube (think PAINFUL). Although she didn’t think it’s full thickness endo, she also told me that she had a patient previously who she also believed to only have superficial diaphragmatic endo and it turned out to be complete thickness.

We also discussed a hysterectomy. As she bluntly put it, based on my FSH and AMH results, my ovaries are “in the toilet.” I wish that weren’t true, but it is! On top of that, BOTH of the veins leading to my ovaries were enlarged, meaning that I have pelvic congestion syndrome. Terrific. She also believes that my uterus is a cause of significant pain for me, because when she pushed on it I about jumped off the table… all this is to say is that I’m going to have a hysterectomy. My right ovary is completely adhered to the pelvic wall by adhesions, so if she can get the left ovary free as well then she’ll try to leave it.

Which leads me to another concern — apparently during my very first surgery in 2011 for endo/bilateral ovarian endometriomas, the pathology report on one of the endometriomas came back saying they were “atypical.” I didn’t think it was a big deal (because the endometriomas were removed) and no one ever mentioned anything about it to me. I was very new to the endo world and didn’t know to ask questions about it. However, last week my surgeon told me that she’s only seen the “atypical” pathology twice in her career, and that it could very well mean that I could get a slow growing cancer on my ovaries. (I later looked up some research studies that validated that concern.) So, she said that if she can’t get all the endo removed from the remaining ovary, that she’s going to remove it because of the risk for cancer. Yay.

Lastly, good old childbirth has given me a prolapsed bladder, so she’s going to fix that. I guess there is something to look forward to!

Surgery is scheduled for early June. I’ll be traveling with my Mom (hubby is taking time off work to stay with the kids) and we’ll be up in WA for 6 days. I thought about driving both directions, but I don’t want to take the extra 2 more days away from my kids (and my Mom from my disabled sister and Dad).

As far as recovery goes, I really don’t know what to expect, because it all depends on what happens during the surgery. I just hope that this is my last surgery!

Thanks for your prayers!!

Leave a comment

Filed under Endometriosis