Corners and Choices

I think that yesterday was the day I finally started to turn the corner. I still have pain in assorted places, but it’s not so bad that I can’t function through it. I’m still three-months-pregnant-with-twins swollen, but that’s actually a decrease from a few days ago, and best of all, it doesn’t hurt to touch my belly in most places!

So, I think the corner is being turned, slowly. Or, as I told someone, I think I see the light at the end of the tunnel, and I’m no longer hoping it’s a train.

In other news, it appears that I’m 1 DPO today. If CD1 comes on 11 DPO, then it will be 12/10. I am supposed to be on a trip back to SoCal to visit friends on 12/10. I fly back home 12/11. This means that if my period waits until 12/10, I will have to do a CD3 baseline on 12/12 or miss this cycle. If my period doesn’t wait, (I’ve had a lot of 9 day luteal phases) I’ll either have to fly back early and miss seeing one of my closest girlfriends, or skip another cycle. Choices to be made.

There’s another layer of choices, too, though. My boss called me last night to tell me about changes at my office. When I return, we’ll be announcing that she’s moving to a new job (awesome promotion for her) and I’m taking her role (awesome promotion for me). This means that taking off the morning of my first day back is not the best choice. But it’s necessary for baseline. Choices to be made.

If I put my career and cycling first, the simple answer is to cancel the trip. Then I’ll be here for baseline whenever CD1 comes, and I’ll be in the office when needed. I’ve put my career first for about 10 years, which is partly why I’m fortunate enough to have a great job and this promotion opportunity. These last two years, missing work for months due to health issues and not being fully “present” due to morning sickness, grief, and pain, have really done a number of my sense of career-related self-worth. That said, the last two years, meeting and saying goodbye to our daughters, have also done a number on my priorities.

I miss my girlfriends from Ca. I’d like to see them. When I was at my lowest back in January, I'd have given anything for the ability to get together with my two best girlfriends and just hang out. I wasn't well enough to do so back then. 

Choices. Not easy ones, but choices. I feel so grateful to have these choices. To feel well enough to be able to consider the trip – up until yesterday I was figuring I’d have to cancel. To feel well enough to cycle again – that wasn’t a given, either. To work for an organization that, despite me missing an entire quarter of this year, and two months of last year, is still promoting me. I can assure you, my last company wouldn’t have done that.

I’m grateful for the choices, but it doesn’t mean that making them is any easier! Magic 8 ball time?

Micro-blog Monday: A Micro Period

Here's attempt #2 at Micro. Want more Microblog Mondays?  Head over to Stirrup Queens to read more!

As an Asherman's patient dealing with IF, you know the one thing that's worse than having your period go missing?

Realizing that the light spotting you had the morning of 11 DPO, your usual period day, WAS your period. Apparently my lining is so jacked up, that with a 24 day cycle, ovulation on day 14, and prometrium from 16 to 24, I only got enough lining to spot.

I am wishing, hoping, praying, etc. that with Estrace and stims to increase my endogenous estrogen, I'll be able to build a lining. But I've never had this little before, so I guess we'll see.

Thanksgoodness!

It may be Thanksgiving, but as a gluten-intolerant pescatarian, I've never been much for celebrating. Instead, I'm going to celebrate Thanksgoodness!

Why, you ask?

Billed to insurance for my TAC surgery:
$4,000 for Dr. $47,664.33 for University of Chicago med center and all associated care.

Paid by my insurance for TAC surgery:
$2,600 for Dr. $26,310.72 for University of Chicago med center and all associated care.

Paid by me:
$0 - In-network Out of Pocket Max reached.

To be fair, I've spent well into the five figures this year due to having no fertility coverage and hitting my out of pocket max, but it is such a relief that this surgery isn't going to cost any more. I know a lot of insurers refuse to pay for it, so I'm super, super grateful for mine. The fact that I have STD coverage so I can afford to be out and recover is even more amazing. I am so grateful, I just have to say Thanksgoodness for my insurance!

Small Wins

Slowly I am gaining some small wins.

As of last night, I can sleep on my left side again! I still can't sleep on my right side, but I'm hopeful that will come.

I am able to sit up without pain for at least a few minutes at a time, so long as I lay back down once the pain starts up again.

DH got his STD screening done! He described it as "the worst possible way to lose weight." Fortunately I'm not very mobile and he's very cute, because saying that to the woman who has had her insides surgically carved out, repeatedly, was probably unwise.

Still no period. I am beyond perplexed. My temp is slightly high for follicular phase, so I'm not to the point of panic yet, but I wonder if swelling plus my tilted uterus could be preventing things from escaping? I still am scared that the Asherman's has won. Let's not think about that just yet - today is a day for small wins of mine, NOT big wins for Asherman's!

Missing a Few Things

Things that are missing:

1. My period. Can I tell you how worried I am? I've NEVER had a 14 day luteal phase, even with progesterone. There is no chance I'm pregnant. My temp has dropped. There is no bleeding. Does this mean my lining is gone? My uterus is fused shut? This surgery, all this pain, was in vain? I am not in a good place.

2. My ability to know when I have to pee. I guess the swelling is still bad enough that I can't tell if/when I have to pee. This is not good.

3. DH's STD screen. To be fair, this isn't missing, he just hasn't gone to get the blood draw. I guess this doesn't matter - no period means no RE, no RE means he'll never need his STD results. That said, I'm really frustrated, because I've just been fucking cut open and he can't find the 2 hours it will take to get a blood draw. I know he's super stressed and I know he hates needles, but that, combined with the fact that he left me mid-recovery to go to CA for a business trip does not leave me feeling supported. And that's partly not fair, because he took amazing care of me in Chicago and on the first day home, and no one's taking care of him, but it's still how I feel.

4. Seven pounds. I am officially back at middle school weight. Not being able to eat for more than a week is suboptimal. It's not what I want going into trying to get pregnant again, and it's really depressing, because I spent the last few months trying to get back in shape and now I've probably lost what little muscle I gained. Did I mention that I'm not in a good place?

5. My willingness to touch myself between my belly button and my knees! Seriously, between the incision, the abdominal pain, and the digestive pain, plus the history of uterine infection, I get scared each time I have to do things like use the bathroom and take a shower. I don't want to touch myself. It hurts, I'm worried I'll "break" something, and it's so depressing to see my body so trashed for no obvious benefit (see #1). And since we're on the TMI train, I'm sure not ready yet, but I am so scared about having sex again. I know the TAC will have no impact, but I've got this irrational fear of pain or problems during sex. This sucks.

Not-so Micro Blog Monday

Note: I am trying to participate in Microblog Mondays. On reflection, I don't do great with the Micro part. Does it count if this is shorter than my last few posts?

Today was my original return to work day. Hah! I guess I still have some optimism in me.

As for the rest of me - there are some "Yays!" and some "Boos!".

Yays: The incision is starting to tug/pull more, which I suspect is healing. I can roll my hips over in bed using my ab muscles. Swelling is down on the right side of my abdomen and I can even take a full breath or yawn! I am off all medications.

Boos: I have one section of colon that’s still stabby. I can breathe when on my back or on my left side, but the pain gets so severe when I'm on my right side I can’t breathe at all. The hemorrhoids are resolving but the skin around my bum is in horrible shape. Sitting, standing, moving - I am constantly aware of the pain!

Please tell me this will all be worth it some day?

Want more Microblog Mondays?  Head over to Stirrup Queens to read more!

TAC - Part II

Saturday
Somewhere in the early hours of the morning, after the reglan kicked in, the pain got so bad I gave up and used the pump. I knew it would prolong the pain, but I literally couldn't draw a full breath and was too exhausted to care. It took the edge off, nothing more. That said, I got more pain relief this time than I did when I lost the twins and was on narcotics and NSAIDs, so that was beneficial. Sometime in the morning, the nurse came. I still had a catheter, but really felt like I needed to urinate, so I asked her to remove it so I could go. Initially she just asked me if I'd tried to push to pee with the catheter in - rather than helping to remove. Eventually she took it out, and DH helped me stumble to the bathroom. I peed, which caused burning in my incision, but otherwise was fine. The next time I peed, about an hour later, I got the explanation for why the catheter hadn't worked: a decent amount of air came out along with urine. That would have impacted the catheter, and wasn't good for me. Once again, the UC nursing staff missed something.

Eventually Dr. Haney came in. He said the cerclage itself had gone well - 3 bands placed, but then commented that I had serious digestive system issues. Apparently he thought my colon was the worst he'd seen in 20+ years - it was so bad that he called the intern to scrub in so she could feel it. I'm not going to lie, hearing that some random intern had her hand in me and squeezed my now utterly agonizing colon really irritated me. First, it's rather rapey to do that to an unconscious patient, and second, the last damn thing my poor colon needed was someone else messing with it. Haney commented that his wife has similar issues, and her GI encouraged her to do a colon resection to address it. This is not the first time major GI surgery has been suggested to me. Haney said the same thing my past doctor did - wait until it's a lifestyle issue, then address.

I asked Haney for an ongoing rx for Reglan for the next few days, and he agreed because it would help restart my digestive system. I also asked for ambien, as I find my sleep schedule gets really messed up from anesthesia. He wrote both prescriptions, told me that he'd write me out of work on STD for a month, although I could return earlier, and said I was good to discharge. I badly wish I had felt better so I could have celebrated how well the TAC went, but I was in such bad shape I didn't care.

Originally I had booked a room at the LaQuinta because the Hyatt was much more expensive. At this point, with the agony I was in, I had DH change reservations. The Hyatt was great, got a room with early check in for us. I was discharged around 1. I had been worried that with my "23 hour hold" at the hospital, they might discharge me before I had anywhere to go, but the day nurse said she'd be happy to hold me as long as needed - it meant she probably wouldn't have to admit another patient before her shift ended! My discharge instructions were a hot mess. Despite my chart saying everywhere that I'm allergic to NSAIDs, discharge instructions said to use percocet and aspirin every 4 to 6 hours. There were other errors in the instructions but that one was the truly dangerous one. One more example of how bad the University of Chicago hospital was.

DH had to help me get dressed, between the surgical and intestinal pain, I couldn't even raise my feet up to put my own socks on. A hospital "patient transport" person was assigned and was going to take us directly to the car in the parking structure. Since I get cold extremely easy, and I was terrified of shivering with the abdominal incision, going out into the 30 degree structure seemed a poor choice. DH asked the transporter to please leave me somewhere warm while he brought the car around. That concept took a long time to convey, but the lady was super nice.

The Hyatt had a wheelchair, so DH checked in, got the wheelchair, and then got us and our stuff up to our room. We were in a block with a whole foods and a nearby CVS, so DH left to get some food for me and to get my prescriptions. At this point I was still having to use the percocet every 4 hours, and the tylenol every 6. DH brought back great food options, but all I could get down were a few bites and then the pain was too much and I stopped. I think I watched some Law and Order, and went to sleep. DH went back out and got himself some deep dish Chicago pizza.

During all of this time, the surgical incision was sore, and it burned like mad when I had to pee, but wasn't horrid. The entire length of my sigmoid colon felt like it was being stabbed repeatedly, and my whole abdomen was painful to the touch. I couldn't pass gas in either direction, or get anything moving in my GI system, and it was awful.

Sunday
We had planned to drive home Sunday. Although I still couldn't take a full breath, and didn't want to contemplate 8 hours in the car, I was terrified that eventually my digestive system was going to let loose, and I didn't want a blow out in the car. DH loaded me up on meds, went and bought Depends and wet wipes as an emergency measure, and we set off around 10-11. Talk about reaching a new low.

The drive was miserable. One side effect of all the swelling was that I couldn't feel the need to urinate. I was also not sure I could make it from the car to a restroom, so I was really worried. About 5.5-6 hours in, the pain got worse despite the meds and worst of all, I started to have muscle spams down the left side of my abdominal muscles, where the pain was already the worst. When it was happening, I couldn't breathe at all. Eventually it got so bad I told DH he needed to pull over. I knew if I couldn't stop the spams, I would need to find a hospital because I wasn't making it home. I legit thought I was at risk of lung collapse or just hypoxia from being unable to draw a breath. I also thought I might need to pee, but there seemed to be absolutely no way I could get from the car to a potty. DH stopped at a random diner somewhere in the middle of nowhere in Wisconsin. I asked him to figure out where the restrooms were, and he did, then moved the car as close as possible and helped escort me in. Standing up and moving, as hard as it was, helped, and peeing helped even more. I still couldn't breathe deeply, but the spasms stopped. Random Wisconsin diner, thank you - I owe you more than you know! We decided I would take an ambien to see if I could sleep, since part of the problem was muscle tension (confession: DH drives a bit aggressively, and when I know that's happening, I freak out and tense up - that was part of the issue).

I texted my family waiting at home to ask for specific food and to ask them to put a sheet on the sofa so I could sleep on the main floor if I couldn't walk down stairs, and to make up our other guest bed in case I could walk downstairs. Our waterbed, in the master bedroom upstairs, was a clear impossibility because it's low to the floor and hard to get out of normally!

We arrived, I had a bit of food, crashed on the sofa, then shuffled downstairs to the guest bedroom and crashed there. DH made himself a bed on the floor next to me, and set alarms to make sure I woke up to take pain meds at all the right times.

Monday
Monday was more of the same. Some pain control with the meds, but still tough to take a full breath. I got my first shower. DH had to help me with my socks again, but I dressed myself otherwise. At this point I'd been on Reglan since Saturday morning, AND been taking peri-colace, miralax, and cirtucel. Still, no movemenet until just before bedtime. I can still no longer tell when I need to pee, and there's still intense burning and bruising along my incision line.

Tuesday
GI swelling is finally starting to reduce on the right side of my abdomen, and the pain is dropping a bit. Surgical site pain is getting better. DH gets busy with work, so I get a shower on my own with no issue. GI floodgates open and I'm constantly using the toilet, which in turn triggers other problems. Stop taking percocet mid-day. Remain on Tylenol 325 every 4 hours. Make sure to get up and walk laps around the house every hour, and it's going ok.

Wednesday
DH leaves for a work trip. GI pain continues to reduce, surgical pain is clearly getting better. Swelling down - can see my hip bones again! Able to move my hips using my ab muscles for the first time when rolling over in bed! Very excited. Constant bathroom trips after severe lack of bathroom trips has resulted in a thrombosed hemorrhoid. Also, the constant wiping gets the skin very irritated. I find myself wondering how in the hell people have/enjoy anal sex. Pain from an entirely new part of my GI system is not wanted! Push Tylenol out to once every 6 hours. Am finally able to take full breaths with only mild pain! No longer burning around incision site and incision bruising is gone, although what appears to be a thumb-sized blood blister remains on the left.

Thursday
Thursday AM goes well. Similar to Wednesday. Hemorrhoid pain getting worse, GI pain getting better. About 5 pm, all that changes, and I'm back to knives stabbing my colon and an inability to take a full breath. At this point I'm only on Tylenol and I don't want to change that and add percocet back, so I try to solider through. I have to cough, and despite holding a pillow to my stomach, I start my incision bleeding. Can't stand to be touched on the left side of my abs. I am unable to sleep because the pain is so bad when lying down that I can't breathe at all. Drowse after midnight while propped up in bed with pillows.

Friday  - well, I guess I'll split this into 3 posts! So far I've gotten a shower and been off all pain meds, but still have a stabby colon. I will not be returning to work Monday like I'd planned, nor will I get to cycle again in November. I'm sad, but my body is really jacked up and needs time to heal. Hopefully part three of this note will be better.

Oh - and as a side note, remember the mice? E-gads, they've taken over. :( Dad has trapped 10 since he arrived on Saturday. Bless my amazing family for dealing with me and all of this.

TAC Experience - Part I

​​​​​This will probably be long, so I'l split into two posts, but I wanted to capture what I remember from my TAC experience. Please be warned, I had some unusual complications, so this isn’t an easy/happy or normal story. Unless you have digestive issues like me, don't assume this will happen to you!

Tuesday
This was our twins’ first birthday.  I had wanted to recognize the day by writing a letter to them and burning it in our wood stove after having dinner out with DH. Instead, DH decided over the weekend that we need to recaulk/re grout our huge master shower. We limited it to caulking, but it was still a four day project. I spent most of my day getting the house ready for my dad and step mom, stripping caulk from the shower, and then trying to clean some of the innumerable bits of stripped caulk from the bathroom floor. I didn’t have time to get ready for dinner and never vaguely had a chance to think about my letter or the fire. The priority was having a shower when I got home from the hospital and wouldn’t be able to move. As it was the bathroom was a complete mess when we left, with tools, chemicals, and bags of supplies everywhere, plus caulk scrapings everywhere but the floor. Not a good day.

Wednesday
I got one last good workout in, and we headed out to Chicago. Just to add to the fun, as I went to throw out all the trash in the house before leaving, I discovered that we had mice who and apparently arrived en-masse and chewed through our trash bags. Sent an apology note to dad and SM and left anyway, as there wasn’t much we could do.

I drove for the first 4-5 hours while DH worked, then he took over. Chicago traffic was awful. We got to our hotel around 6, and got upgraded. Highly recommend the place: The Guesthouse, in Uptown. We walked to dinner. I got a rice, kale, and sweet potato bowl with Thai peanut sauce and it was terrible - inedibly salty. I was too hungry/hangry  at that point to find a new place to eat (it was also below freezing, windy, and a 3/4 mile walk to our hotel), but the manager refunded my meal. DH took me to Baskin Robbins, and then we returned to the hotel for the best night of hotel sleep I’ve ever had.

Thursday
I had grand plans to do something fun in Chicago this day. Instead I had a two hour work meeting, we got breakfast at this amazing cafe, then spent way too long driving to find the hospital complex and the hotel for afterward. We got Thai for dinner and it was good. Side note: it’s really hard to find gluten free vegetarian food in Uptown. I was really disappointed. I was NPO after midnight.

Friday
I had to check in at  7:30, and we were worried about traffic, so I was up early and got a shower. Didn’t hit any traffic. Parked in structure A ($18/day with validation) and went in to the DCAM same day/ambulatory surgery for check in. They gave me a number so DH could track my status on the monitors, and then I waited.

Just after 7:30, a pre-op nurse came and got me. She confirmed my name, dob, allergies, and had me give a urine sample for a pregnancy test. I got three bracelets - one for allergies (it just said “multiple” since she didn’t write them all down), two identifying me. Then I changed and put all of my clothes and belongings into a plastic garment bag. Next up was an IV. I’m allergic to adhesives and they had very few choices for me, far less than my local hospitals. That was suboptimal. I was told my temperature was 99, which is very high for me, but not high enough to postpone surgery. I suppose that might have been a harbinger.

Once I was set with a warm blanket, DH came back and kept me company. First a resident came in, confirmed the surgery I’d be having, and then had me pull up my hospital gown so she could write her initials on my abdomen. Apparently they do this to make sure they’re operating on the right part of the right patient? Either way, I’m not thrilled still having her initials on me as I don’t really want to scrub hard that close to the incision site and the ink is. .  . Tenacious!

A research assistant came in and asked if they could take a tissue sample during surgery for research on ovarian cancer. I asked what the risks were and she couldn’t answer. That lack of professionalism plagued my stay. I felt oddly pressured, but as the daughter of a breast cancer survivor, agreed.

The anesthesiologist came in and told me that since I’m not pregnant, I had the choice of general or spinal. He also said that if I was pregnant, Haney would require general, to make sure I didn’t move at all. Most importantly, he told me that if I did the spinal, he could still use enough profofol that I wouldn’t know what’s going on, but he wouldn’t have to intubate me. That sounded good to me.

Haney came in, and reiterated a lot of what he’d told us during our consult. Then it was go time. I got one last hug from DH, and was wheeled into the OR. Everyone kept talking about what an ideal patient I am - I guess I have a nice spine for a spinal! :) I met all the OR nurses, got moved onto the operating table, got the ekg leads placed. A nurse set up a surgical instrument tray/stand with pillows, and the anesthesiologist had me sit up and lean over it. I remember him asking about glove sizing and that’s it.

Dr. Haney tells me that at one point during the surgery when they were tugging very hard, they heard my voice from over the drape asking to be knocked out further. I’m thrilled to report I don’t recall.

To be honest, I don’t recall waking in recovery, either. The first thing I remember is the feeling of being wheeled somewhere. Someone told DH or I that I had a pain pump to use, and then I was left in my “observation” room.

When I was lucid, I was in an insane amount of pain. Not from the surgical site, although I could sure feel that, but from my digestive system. It felt like someone was stabbing knives through my colon, constantly. I know my body well enough to be aware that’s what happens when my colon shuts down and gas starts to build. It was so bad I couldn’t draw a full breath. I knew that narcotics would make it worse, so I didn’t want to use the pain pump. DH and I asked, over and over again, for hours, for an alternative, and were just repeatedly told to push the button on the pump. It was an awful frustrating experience, to be in absolute agony, unable to breathe, and we couldn’t even get a doctor to come tell us there were no other options than narcotics.

Somewhere in there, I started throwing up. Puking with an abdominal incision is a special kind of hell. They wanted me on zofran, but that causes the same digestive problems, so that was a no-go. There are three things I know I can't have if I want my digestive system to work: sudafed, zofran, and narcotics. The hospital had me on two of the three.

After hours, the resident on call came in and told me to take the pain pump and the zofran, in a pissed off tone. I told her the problem wasn’t surgical pain, it was digestive, that zofran and narcotics would worsen it. She didn’t say anything useful. I asked for reglan instead of zofran, because reglan will cause the digestive system to speed up, doing exactly what I needed, and will reduce nausea. She agreed to that and left.

That was my night.

Clear!!!!

Emerged from 3 hours of meetings today to find a voicemail from my OB: No evidence of CE via histology on the biopsy!!

That was the last hurdle before the TAC, so it's really nice to have it done. I'll hope to have more good news in the coming weeks and months.