I'm Free!... From the Hospital

What a trial, having children. Ours more than most, due to my recent Borderline Ovarian Cancer diagnosis. For the past four years, my husband and I have had to duel with the possibility that we may never have children. It is only by our wills, and the kind, generous involvement of family, friends, and friends of friends, that we were able to afford In-Vitro Fertilization (IVF) through an online crowdfunding campaign. But the struggle did not end with egg extraction and embryo freezing. No, when the likelihood that a tumor will return is assured, every oncologist prefers to eliminate all possibilities; both ovaries had to be removed.

My OBGYN did not inform me of my first 15cm cyst. I found
out the hard way with extreme pain and a visit to the ER.
Keeping up with your annual "Women's Wellness Check-up"
is the least we can all do to prevent Ovarian tumors from
claiming our lives.

We knew this two years ago when we begged my gynecological oncologist to save my one remaining ovary so we could attempt IVF, and banked on it as we successfully stored 13 frozen embryos; but we did not foresee any complications with the final surgery. After all, removing my last ovary and starting Hormone Replacement Therapy, so I don't start menopause at age 34, should be the easy part. Keeping the oven on, as it were, shouldn't be difficult. Of course, Murphy would have no part of it. He'd rather see our last surgery as the most difficult (though, least expensive *knock on wood*), including a post-surgical infection and unsightly scarring, before we even attempt to deal with the thrills of actually conceiving and delivering said children.

But, as my husband likes to say, "we'll have quite a story to tell our children!" True, love, true. Here's the latest episode in "Karen & Quentin have children":

A lovely reminder at my Gynecological Oncologist's office.

My laparoscopic surgery to remove my right, and final, ovary, which already had two 2cm cysts, was scheduled for Monday, July 20th, 2015. My mother, who had graciously dropped everything to be available for the first two surgeries and some part of the recovery afterwards, had made arrangements to fly out for the final occasion. My mother-in-law, whom my husband and I have been living with for the past year, agreed to supervise me during recovery, while my Aunt would join my mother and my husband in the waiting room. With little concern for the final surgery, and the growing number of people becoming involved, I decided to lighten the occasion by cheerfully referring to everyone as the "Waiting Room Party" (in the spirit of a "Wedding Party", not as in a celebration). We did make time for a dinner out the weekend before, to a lovely nearby Japanese Steakhouse with habachi - my favorite. However, this round of surgery, while highly anticipated, was also the most populated and the most ignored. We all kind of figured it was old hat, and with two previous successful surgeries, we knew how to handle it. My mother, perhaps because of distance and her inability to be of direct help was the only one who stopped to ask "what if", and she was right to ask. But we shrugged it off and moved on unprepared. It's amazing how diligence dissipates with the absence of the urgency of emergency.

My husband and I at the "Waiting Room Party" celebration
at the Japanese Steakhouse - July 18, 2015.

As part of registration for surgery, a representative from the hospital typically calls. S/he will confirm details, including, but not limited to, allergies, medications, and, most importantly, expected out-of-pocket cost upon checking in for a scheduled surgery. We were called by the doctor about a week before hand to arrange her direct payment and shift the time of the appointment, later by an hour or so, so we saw it as a boon. However, we never received a call from the hospital, not even from the anesthesiologist, who usually calls to ensure you know you'll be paying for their services separately. By the time I thought to call them, there was no one there - only emergency services over the weekend. I dropped the ball.

We arrive early for my scheduled surgery, and I nearly walk right over an elderly man in the waiting room (I'm still waiting to karmically apologize to him) to check in and find out what happened. Their explanation? They didn't have my phone number. I'm sorry, WHAT? Yes, apparently the appointment was only made four days before the scheduled surgery, despite the fact that I had made the appointment with my gynecological oncologist two weeks before surgery. But even with the time difference, it didn't occur to anyone to make sure they had my phone number? Hospital drops the ball.

My eldest kitty, Isa (yes, she's a female orange tabby), always knows
 when I'm not feeling well. She's been with us through the previous
 two surgeries and each time she finds a place close by to keep me company.

Luckily, the nurses took good care of me, making sure my least favorite part of surgery - the dreaded IV - was not another communion with the Matrix. Even the anesthesia was amazing. I felt so good when I woke up that I was able to shuffle myself to the bathroom and back so I wouldn't be forced to use a bedpan. They gave me another round of IV painkillers so I could make the 90-minute drive back to the Dayton House. But that's the last time I would feel "good" for another three weeks. Partly because I would start oxycodone that night, and I hate oxy. One of the side effects of oxycodone is bloating, which puts pressure on the abdomen, precisely the area that needs relief after abdominal surgery. I'm perpetually uncomfortable while on oxy, so no matter what pain it subsides, I'm still miserable until I can stop taking it. But my health also continually declined because this was the first time my sutures were around my navel, a difficult place to both see and keep clean.

The two previous surgeries both had the robot arms (characteristic of laparoscopic surgery) going through the top part of my abdomen, which meant that observing, and caring for, the previous wounds were easier. The previous surgeries also used dissolvable sutures, which took the guess work out of whether or not the wound had healed. Finally, and most importantly, we always went home with wound care instructions. For the record, wound care differs for dissolvable sutures, so this surgery, without dissolvable sutures and without specific wound care instructions, seems doomed to have a post-surgical infection. I just didn't know to be worried about it because it had never been an issue before and, frankly, my doctor and I never talked about what she was going to do differently. I didn't know about the navel suture until I read the brochure she left me with, which did not address "difficult to clean" and "signs of infection". Of course, when I was finally hospitalized for it, my doctor says, "It happens", which is professional speak for "I will not assume any responsibility for it occurring". But I'm skipping ahead.

I get to the Dayton House, and I'm doing ok. I'm only taking 800 MG of Ibuprofen during the day, and oxy at night, which means I'm not sleeping through the night yet and having to eat every four hours to take my dose. I'm still mobile, but as my post-op appointment the following Tuesday approaches, I'm feeling more tender, and less bold. At my post-op appointment, my doctor looks at the navel suture, and declares I have a superficial infection. She then prescribes a generic oral antibiotic, and says I should call her if the redness increases. Well, it's not like I have her cell phone number, and calling her office means she won't get back to me for another 24 hours. We also couldn't tell if the redness was increasing, only that there was redness. But two days later, we could definitely tell that my temperature was increasing. By this point I'm only taking the 800 MG of Ibuprofen every 8 hours, for which I was relieved, but even with the Ibuprofen as a fever reducer, my temperature topped at 101.7 degrees by Thursday night, 10 days after surgery. It wasn't until the bleeding/oozing from the suture started that we decided to go to the Emergency Room. Doctor drops the ball.

The redness after cleaning the wound the night
after my post-surgical check up, Tuesday.

My in-laws are kind enough to drive me to the ER with my husband in the back checking in with me. The hand towel, kindly donated by my in-laws, is quickly becoming soaked with blood, but it's not just blood. There is an odor, and I report as such during the whole ride: "It's not just blood. Can you smell it? It smells terrible. It's not just blood." We get to the Baytown ER about 30 minutes later. They bring out a dysfunctional wheelchair for my comfort, then interview me to understand how immediate my needs are. Not so immediate, it would seem. We arrived at approximately 10:45pm, but were not taken back to see a doctor until 4am. Unfortunately, or perhaps fortunately, I was told to go ahead and take my 11pm dose of Ibuprofen. This was good because it helped to suppress my fever and make me feel better, which I already was. After soaking through the in-laws towel, the hospital gave me another one, which I soaked halfway through fairly quickly. They gave me a dressing for the wound at about midnight or so, at which point the oozing had mostly stopped, and my fever subsided. However, while I was feeling better, the doctor pointed out that the infection was most certainly still there, and some indicator of that was my fever. "But my fever is gone", I said, not considering all the reasons it might be gone. "Yes", she agreed, but only to concede the fact, "but you took Ibuprofen, which could be the reason for the lack of fever." Huh. Ok. Now what?

The redness after to oozing stopped, 

at the ER about 4 a.m. on July 31st, 

2015 - the Blue Moon.

"Because this is a post-surgical infection, we prefer to let your doctor, who did the surgery, treat the patient. She can meet you at Houston Northwest, and we're prepared to have an ambulance transfer you there." I'm sorry, what?
"Do I really need an ambulance? I mean, we drove here. Can't we just drive ourselves there?"
Her concern for me was very convincing: "Well, you could, but you'd have to wait in the ER there, and we don't know how long that would take. Plus, we'd like to start you on an Antibiotic IV here, and we can't do that if you aren't taking the ambulance." Ok... four hours ago you weren't this concerned.
"So, if you don't mind me asking, how much is this going to cost? We've been told by family that it could cost up to $2,000."
Almost scoffing, "Ha. Honestly, I don't know how much it will cost you, but that figure sounds like someone who asked for an ambulance and didn't need one. If I, your doctor, am telling you you need an ambulance, then not only should you do it, but I'm confident that your health insurance will not charge you so much if they understand that you need it."

My view at Houston Northwest after being
delivered from Baytown's ER. All things
considered, it was a very nice room.

And with that level of conviction, we couldn't say no. Q&I took our first necessary ambulance ride from about 5-6am on Friday, July 31st, 2015 - the Blue Moon (let it be known that from now on, I will see future Blue Moons with a heavy heart and a wary eye - if "once in a Blue Moon", I get to ride in an ambulance, then I'm not looking forward to the next one). With the transfer from one hospital to another, they were able to prepare a room for me. After being delivered straight into my "room" for the weekend, we tried to rest, but frequent interruptions defeated our efforts. To add discomfort to an already upsetting evening, I hadn't been allowed to eat during the course of the night.

Hospital swag with my vanity and

bathroom in the background.

Originally, we had a CT scan scheduled for that day elsewhere, but due to the hospitalization, my doctor figured to do it there. But because of the impending CT scan, I wasn't allowed to eat... which started at the ER, at 10:45pm. By the next day, I was hungry and tired and mostly out of it. My doctor didn't arrive until midday, and my CT scan started around 3pm. After that, I was allowed to resume my "normal diet", whatever that is. Hospital food, while well-rounded, gets old quickly. It took me weeks before I'd be willing to eat mashed potatoes again.

A neat little device they give
you to practice breathing so
you don't develop pneumonia.
More people need this just for
daily use!

Nothing showed up on the scan, except the infection, which was a relief. However, this now meant I was required to stay at the hospital for fourty-eight hours on IV Antibiotics and under observation. If I was without fever during that time, then I would be allowed to go home. But what should have ended Sunday night was extended until Monday night due to the Wound Care Nurse, of which there was only one. She left at 3pm on Friday and wouldn't be back until Monday, and my doctor wouldn't discharge me until the WCN saw me. Interestingly enough, it was the WCN who gave me the wound care instructions, and another nurse who gave my husband a tutorial, so he could be my regular at-home nurse. When did wound care become so mysterious that it requires a specialization? But I'm getting ahead of myself...

Friday night was the worst. I was finally able to eat, but I could hardly eat anything. I was in the same clothing from the ER, and it had turned crusty from leaked bloody puss from the ER, and had started to small of terrible cheddar. And to make matters worse, Q hadn't gotten any sleep, so he went home that night. He helped me shower and change before he left - there was no sleeping with that awful cheddar smell. And it's good that he left so he could bring me back a change of clothing on Saturday. But that night I had a terrible time sleeping. Finally, I had to ask the overnight nurse to switch the IV to the other arm, as the needle and apparatus in my right arm was so uncomfortable that I could not sleep. Also, the IV was in my good vein, the one everyone likes using for drawing blood, but with the IV in place, they were forced to try to find less inviting vains to poke at at four in the morning.

They finally switched my IV onto my left side
so they could draw blood from my right side,
which is my biggest and best vein.

Ok, I'm sorry, I know it's getting gross. Here, let's skip to the end...
Visitors, clean clothes, walks around the hospital, 4:00 a.m. conversations with disgruntled nurses who are moving on to become a Realtor instead, and late nights watching Arrow, Season 1 (again). But most importantly, NO FEVER! But, I did get a rash. There was no telling what started it, so my doctor switched my hormones (HRT) from the patch to a pill. I seem to be doing okay, but when I first started reacting, it just felt like a sunburn... for a hospital patient in bed most of the day with little access to sunlight, much less sunlight just on my back. Weird, huh?

Hospital selfie...

But I was discharged the following Monday, after a lovely weekend stay at Chez Houston Northwest, with plenty of hospital S.W.A.G. - who knew hospitals gave out swag? Weird. And what was my first meal after my liberation? Two crunchy tacos from Taco Bell. I know, it's terrible. But after hospital food, it's delicious. Unfortunately, I was scheduled to return to work the next day, but had to extend my recovery time due to the infection. My supervisor and I were able to work it out, but it was not a vacation by any means. I even had to have an at-home nurse come by, do the wound care, and discharge me before they sent me back to work.

Flowers and chocolates from
my stepfather in Guam. Love
the bright colors!

Now, I'm back at work, mobile, and (mostly) pain-free, but I still can't workout until the wound has healed up entirely (though, that's mostly due to timing). As far as I'm concerned, everybody involved dropped the ball going into surgery, including (and perhaps especially) myself. I'm mostly upset with the hospital, with my doctor in a close second. Now, with my first post-surgical infection, we're scrambling to get back into the "if I don't ask, they'll never tell me" mode, so that we can prevent future hospitalizations. The wound started at 6cm deep and has now receded to 2.5cm (approximately). I have a follow up with my doctor on Sept. 9th.

My husband has been a particularly big help as my relief nurse, handling the "wound care" demonstrated by several nurses. My Aunt was kind enough to visit me in the hospital during my weekend away. A great big THANK YOU is owed to my in-laws, who drove me to the Emergency Room, visited me in the hospital, housed us during this recovery period, and kept me fed and medicated, as prescribed. You'd be surprised how hard it is to keep someone fed who mostly sleeps, plays SimCity, and has an infection which turns off that sensor that says, "I need food!" Finally, I have to thank my mother, who has been sending me daily e-cards to lift my spirits, and my step-father, who sent flowers and chocolate to brighten my recovery period.

My Isa acting as a heating pad after I
returned home from Houston Northwest.

While it was comforting to think that the next time my husband and I would be struggling to sleep comfortably in a hospital room overnight, we'd be doing it to deliver our first child, it is not comforting to think I'll have to do all of that again voluntarily.



***Sept. 20th UPDATE: Two months later, and all is healed up. The medical bills are still trickling in, but we were well prepared to pay for them out-of-pocket. Now, we are looking forward to moving into our own place by the end of the year and starting out family next year. Thank you all for your well wishes and prayers!