Picture it. I'm ten years old, in gym class, dreading the next 30 minutes of my life. The game we all played - the one that has since been banned from elementary schools around the country - is about to begin. I'm standing on the shellacked wood floor, crouched in ready position, as the biggest and meanest kid in the class grabs hold of the bouncy, red, rubber ball. He looks around evilly, quickly takes aim and hurls the round, air-filled weapon in my direction. I jump out of the way, just in time but, before I can take a breath, the ball whips back at my head from behind. "Watch out!" calls an ally, as I turn and duck before the flying sphere knocks me to the floor. But it's not over yet. Each time I dodge one bullet another comes in, faster than the next, until, finally, the gym teacher blows the whistle signaling an end to the torture.
Where's the teacher to blow the whistle now?
Over the last three years I've had so many balls thrown at my head I'm surprised I can still see straight. But, each time, I manage to lunge out of the way and continue playing the game without anyone screaming, "You're out!" I sometimes feel there's a higher power who loves my writing and hates when I have nothing to blog about. "Hmmm, things are too calm in Suzanne's world," he says. "Let's give her triplets! Now let's take two of the babies away. How about some inexplicable pain in her pelvis that makes the doctors think her cancer is back? I know! Let's make her dog choke then send him to the hospital with pneumonia. Better yet, we can give Jimmi a random staph infection, knee surgery and two serious drug reactions, all in a matter of one month!" But, apparently, that being hasn't had enough fun with me. Now, in what should be the last three weeks of our pregnancy, I'm sitting on eggshells, waiting to see if Jimmi is going to miss the birth of our baby.
Yes, you read that correctly. After everything we've been through and as far as we've come to get to this point, Jimmi may not be in the delivery room to watch Aria take her first breath or hear her first cry or cut the cord that will symbolize her disconnection from Lyndsay and entrance into our arms forever.
I don't even know where to begin with my explanation.
I'm not sure exactly when we first heard the news that shot a pang of excitement with a side of devastation through my body. I believe it was back in December, though. Jimmi got the call that his band had secured a spot performing at Rocklahoma, a three-day long rock n roll festival in Oklahoma that, not only have we always wanted to attend, but he's always wanted to play. So, what could possibly be bad about that? Other than the dates…
If you still haven't caught on, let me help you.
Our baby is due on May 18th. Ok, so, that's not so bad, right? It might not be if Lyndsay didn't have a history of giving birth at least a week late each time. I chose not to worry too much about the situation until it was absolutely necessary.
I'm pretty sure I'm allowed to freak out now.
Jimmi's band was confirmed for a 4:20 PM time slot on May 25th, which, as far as I was concerned, was the best possible day of all the bad choices. After all, it was the furthest day from our due date, allowing the best chance for delivery sometime before showtime. There had been some talk of a short tour from New York City to Oklahoma and back, but nothing had been booked and we thought it was safe to assume all dates before the big show on the 25th were open. That made me feel tiny bit better. At least Jimmi would be able to fly out to Minnesota with me on May 12th to wait impatiently for Aria to make her appearance and, if worse came to worse, he could just fly right from the hospital to Oklahoma the night before the show and meet the band there. I booked our flights last Monday and a huge weight was lifted. One less thing to worry about.
That's when the big, red, rubber ball came flying at my head again.
In a casual conversation with Jimmi's band's manager, I learned that three shows, the first on May 20th, had been booked on the way out to Oklahoma and four had been booked on the way back. A tentative return date of May 30th was mentioned, with Jimmi leaving again on May 31st, his birthday, for a three-day tour with his other band. "But we're leaving for Minnesota on the 12th" I typed through my hyperventilation. "They also have a show in NYC on the 17th," he replied.
No. No, that can't happen!
"But our baby is due on the 18th!" I typed frantically.
I called Jimmi in hysterics. "You're gonna miss her birth!" I cried. "You can't be in New York the night before our due date!" Jimmi gave me a virtual slap in the face and I calmed down just enough to explain exactly what I was taking about. "Relax!" he soothed. "It'll all work out!" I didn't believe him. "How?" I asked. "How is it gonna work out?"
He couldn't answer me.
I ran through all the scenarios in my head and none of them had the ending I was hoping for. Chances are Lyndsay will not go into labor before May 18th. If she goes any later than the 16th, Jimmi won't be in Minnesota anymore. Sure, we could attempt to fly him out from wherever he may be, but let's be realistic. He'd never make it in time. I took out a calendar and just stared at the month of May for awhile. If we were home, the show on the 17th would be local so it wouldn't matter much. Everything from the 18th through the 30th was blocked out for the Rocklahoma tour, which includes both travel and performance days. Then a quick overnight at home sends him back out to Arkansas on the 31st with a return on June 2nd. No matter how it works out, Jimmi will miss the first precious weeks of his first, and probably only, child's life. As much as that sucks, I decided I could deal with all of it as long as he makes it to her birth and can spend a day or two with her before he heads out. Then I remembered what Dr. C had told me on more than one occasion.
"Because of your unique situation, we could think about inducing at around thirty-nine weeks to help you with planning."
I hadn't taken that option into consideration until that moment but, right then, it seemed as if the miracle answer was staring me in the eyes. I grabbed the calendar again and scanned down to the 39-week mark. May 11th. Mother's Day. While that would be a perfect present for me, I wanted to be home, in New Jersey, to celebrate with my boys. Since we already booked a flight out to Minnesota on the 12th, the 13th or 14th seemed like the best options for induction, as Jimmi would not only make it to the birth but, all being well, he'd be able to fly back home with us and spend a day or two before journeying out. But I had one more person to convince that my idea was best for everyone.
I e-mailed Lyndsay and desperately pleaded our case. Her response had some obvious concerns about what's best for her and Aria's health but she decided, if the doctor was on board with safely inducing labor, she would be, too. Well, since the Dr. C had already mentioned induction more than once, it should be a no brainer, right?
Wrong.
In case you've forgotten, Dr. C, our OB since the 9th week of pregnancy, after our triplets reduced themselves to a singleton, was deployed to Kuwait last week. We were left in the hands of Dr. H, chief resident, who none of us had even met yet; unless you count the quick e-mail I sent introducing myself that wasn't answered for a full week. But, really, if Dr. C told us 39 weeks would be acceptable, why would Dr. H disagree?
I typed a very detailed and emotional note to Dr. H explaining our situation, trying to keep the desperation out of my writing. I told her about Jimmi's recent illness that forced him to cancel more than a month's worth of gigs. I told her how difficult it's been for me, knowing Jimmi wasn't able to experience this pregnancy. I almost begged her to assure us that Jimmi would be present for his baby's arrival. I figured, as a woman, she'd understand. She wouldn't deny us this experience. She couldn't!
"Hi Suzanne!"
Her reply began.
"Thanks for your e-mail. I certainly do understand the uniqueness of your situation. The decision to proceed with induction will need to be reviewed by the maternal fetal medicine team and the OB team on that week. I will certainly advocate of your behalf, but will not be able to be the final decision maker.
Thanks for understanding and have a great weekend!"
Thanks for understanding? Have a great weekend? Seriously? So, basically, what I just learned is that, if we want to induce on the 13th or 14th, we'll need to wait until the 12th and have two different teams, who don't know anything about us, review our case? Does she realize we're only talking about four or five days before our due date at 40 weeks? Does she understand that women are technically considered "full-term" at 38 weeks pregnant? I don't get it. I convinced the doctor to induce me when I was pregnant with Justin because I knew he was getting too big. The doctor didn't think he was too large but, after a bit of begging, he agreed. The kid popped out of my 5 ft. 2 in. frame at 8 lbs 11 oz. Can you imagine if the doctor hadn't agreed? OUCH! It's not like I'm asking for anything I haven't been through myself. And, since this is Lyndsay's fourth pregnancy, her body should know how to open up and shoot my kid right outta there. She just might need a little help getting started.
Unsatisfied with my non-answer that didn't bring me any closer to a solution, I decided to e-mail Dr. C in Kuwait. He told me he would be reachable if I had any questions and I shouldn't hesitate to write. I just figured, since he's higher up on the totem pole, maybe he could let Dr. H know that it was his idea to induce at 39 weeks in the first place.
I waited a week for a reply that contradicted his early suggestions. Dr. C backed Dr. H's statements about waiting until the week we're hoping to induce to make any decisions. Apparently it'll all depend on Lyndsay's cervix and whether or not it's started to dilate and efface on its own. If it has, we can probably help speed it up. If not, we'll need to wait…up to ten days past her due date.
WHAT!?
I don't understand! Why did he even bother bringing up induction at every appointment for the last four months? Why had he never mentioned the contingencies before now, when we actually NEED to get our baby out by a certain date? Based on her past history, Lyndsay's body likes to keep babies very cozy, with no sign of anything going on until she's actually in labor. That doesn't bode well for our plan.
And that's that. If I had to make a bet I'd say Jimmi will probably miss Aria's birth. It's devastating to even think that way but the odds are not in our favor. I'm just hoping for a miracle.
There are plenty of blogs out there about the hellish world of cancer. But what happens to the "survivor" once the treatments are over and the disease appears to be gone? What does it feel like to live AFTER cancer? You may be surprised how scary it is to plan anything at all, let alone a major life-changer like the one we're about to take on...
Tuesday, April 22, 2014
Thursday, April 17, 2014
The Royal Nursery
Her Highness, Princess Aria's nursery is finally fully decorated!
After months of planning and painting and ordering and organizing and hanging and returning and reordering and assembling and cursing and praising, her room is complete.
And it is BEAUTIFUL!
Don't worry! There will be photos accompanying descriptions of the adorable abode.
Let's begin with the walls:
PINK!
The base color of the room is a perfectly pleasant pink, with one wall boasting a series of stripes in shades of shimmery pearl and gray. Hung carefully between the center stripe are the letters A R I A, which I painted pink and sprinkled with glitter. The pearly accents continue throughout the room with butterflies scattered around the area. Three hand-painted, full-colored and crystal-embellished butterflies are placed in various locations to add a precious pop! A pink to gray ombrè dons the crib wall and a large branch with green-toned leaves and pink cherry blossoms sprawls across it. On the branch is a sparkly songbird singing crystal-covered music notes from her bright beak.
Almost hidden on the wall, to the left of the crib, are two glittered hearts with crystal angel wings, representing Baby B and Baby C, Aria's sisters, who were lost in the 8th week of pregnancy. She will always know they are watching over her, protecting her.
As seen in some of the photos above, the furniture in Aria's chamber is a rich, coffee-colored wood from Bellini. The armoire and dresser, with attached changing table, are the same ones I used with Dylan in 2000, then Justin in 2003. Of course the changing pad and pink velour cover have only just been opened. Because of new laws regarding crib safety, the crib is a recent purchase. The crib skirt is a gray and white damask with pink peek-a-boo fabric. There is a matching blanket which serves no other purpose than to hang over the end of the crib and look pretty, since blankets and babies are a no-no! The white bumper with pink piping and bows adds a sweet and simple touch to the bedding set, but it will also be removed once the baby is old enough to roll into it, causing possible suffocation. It's seriously amazing anyone born before 2000 is alive today with all of these new rules we never had to follow!
Her sheets will alternate between white with grey medallions, white with pink medallions and solid pink, and a pink sheet protector will be placed under the baby's head to catch drool and other leaking fluids.
The plush, gray glider is also a new addition, as the one I used with the boys was pretty gross after years of milk spills and vomit stains. The chair, with its matching ottoman, sits to the right of the crib, next to a small, brushed nickel table with a round, glossy white top. Perched atop the table is a brushed nickel lamp with a pink shade with floral cutouts.
There is one large window on Aria's wall that is graced with four panels of antique white, bunched curtains, tied tightly with pink ribbons. White and pink-striped finials cap the ends of the curtain rod to complete the look.
A gray and white damask rug spreads over the hardwood floor, keeping the area cozy and cushioned for tiny feet.
Aria's closet is already full of miniature couture that spans across the bars and over to the shelves. Generous gifts and immaculate hand-me-downs are responsible for most of it. Anything I've purchased myself still has tags and is off to the corner with the receipts still in the bags wrapped around them.
The chandelier is a focal point when entering the bedroom. I need to credit my friend, Charity, who found it for her little princess on Overstock.com and allowed me to copy her taste. It was a pain in the royal ass to put together, but the crystal swirls and dripping beads complete the feel of the room perfectly.
Lastly, we'll move on to the royal…ummm…throne room. A crystal-beaded vanity light brightens the pink walls and shows off the shimmering, leafy vines that surround you as you stand on the white rug with its purple and pink border. Matching white, purple and pink towels with butterflies and flowers hang neatly below another hand-painted and crystal-adorned butterfly, while two others fly freely in various locations. The white, ruffled shower curtain is hung with clear flowers and the matching window valance is accented by that same white and pink-striped finials as the ones in the bedroom.
Aria's room is absolutely stunning. I must send out a huge thank you to our brilliant artist and designer, Sam Simon of Sam Simon Projects. His incredible skills and attention to detail brought just the right amount of bling and glam into our lives and the finished product is more amazing than I'd ever dreamed it could be.
Sunday, April 13, 2014
Diagnosis Day - April 14, 2011…Scan Day - April 11, 2014
Three years ago, almost to the day, I heard the words that would change my life forever.
"There was some cancer there…"
From my gynecologist's nonchalant choice of phrasing, it sounded as if I had a spot of mustard on the corner of my mouth, left over from that afternoon's turkey sandwich. One swipe of a moistened napkin and I'd be good to go! But, no such luck. The rare and aggressive form of "some cancer" left me without a uterus, fallopian tubes, ovaries, and, for awhile, hair. I was told not to Google Small Cell Neuroendocrine Carcinoma of the Cervix, and I obliged…for a little while. After piecing together small bits of the seriousness of my disease from a Facebook support group consisting of the few others around the world, still alive, with the same ailment, I finally learned the horrifying facts. Even if I completed my surgery, four rounds of intensive chemotherapy and 28 rounds of brutal pelvic radiation, the likelihood that the cancer would come back, take over my major organs and kill me in the next five years would be 85%.
I probably wouldn't play those odds at a casino.
But, here I am, still breathing, living in three month intervals from CT scan to CT scan. It's not the most relaxing way to live but it's my new normal. A few times, my gynecological oncologist thought about moving my scans to every six months, but he quickly rescinded his suggestion and put the orders in for his office to keep up the 90 day schedule. Clearly I'm not the only one who believes this beast could return at any time and he wants to keep right on top of it if it does. But I know just as well as he does, if the demon comes back, I'd be in for a fight that I may not win a second time.
My CT scan, which covers my chest, abdomen and pelvis, was scheduled for March 21, 2014, but Dr. L's office called to move it to April 11, 2014 because he was going to be out of town. Knowing I'd have to wait an extra three weeks turned my stomach in knots and I didn't know if I'd find enough to keep my mind occupied so I wouldn't go absolutely crazy during that time. Little did I know Jimmi would be in and out of the hospital for the last four weeks, which really helped to divert some of my worrying. Thankfully, he was released on Thursday and seems to be doing much better. So the stress turned back to my appointment the following day.
Jimmi and I headed over to the cancer center an hour before my scheduled time because I needed to drink the sticky sweet contrast dye before the test. My mom was just getting out of her car when we pulled into the lot and the memories of the three of us walking in and out of that building almost every day for four months were immediately triggered. The smell of the foyer stopped me in my tracks as I swallowed hard to keep from gagging. I stepped into the familiar lobby and was greeted with a wave and a smile from the friendly receptionist, whose name I've never managed to ask in the last three years. "How are you?" she beamed from behind her desk. "I guess I'll find out," I replied, as I do every three months. We walked up one flight of stairs to the radiology department and I checked in and waited for the clipboard with the paperwork I'm asked to fill out each time I visit. "You can keep the information about the test and the contrast dye," I said. "I know it all by now." I took a pen and went to sit with my mom and Jimmi in the waiting area. After I'd filled out the one sheet asking if I had any allergies, if I'd ever had a CT scan with contrast before, and what medications I was currently taking, I flipped the page and was surprised the second one I see each time wasn't there. "No way!" I exclaimed with joy. "They didn't give me the 'Are you pregnant?' sheet this time! Maybe they finally marked it in my chart that it's physically impossible to get pregnant without a uterus." After three years of complaining to the people at the desk that I shouldn't have to answer that question every time since the answer will never ever change, they finally listened! I walked back up to hand in my completed questionnaire and the receptionist said, "Wait right there a second. I forgot to give you the other sheet." Seriously? "Is it the 'Are you pregnant?' one?" I asked and the man nodded with a smile. "It's only the one question. It won't take long," he said, thinking that would make things better. I wasn't in the mood to ask for my chart to be marked "she will NEVER be pregnant" again, so I checked the box next to "I am sure I'm not pregnant" and went on with my life.
I heard my name being called a few minutes after I sat down and I raised my hand and announced, "here!" as if the teacher was taking attendance at school. The tech brought over the dreaded drink with my named typed nicely on a printed label, shook it, removed the top, and placed it in front of me with a straw. "It looks so dark," I commented on the color that was usually a watery red but now appeared a deep scarlet. "Yeah, we changed the flavoring. It's still raspberry but we use a different mix. People say it's not as sweet," she said. I sure hoped the "people" were right. I brought the straw to my lips and sucked in the first taste of the contrast dye. My face cringed from the sugary fruit punch that I wouldn't drink voluntarily if it was the last liquid on Earth, and I cursed the "people" who had gotten my hopes up about the toned-down flavor. "Let me try it," said Jimmi, holding out his hand. I gave him the bottle and he took a swig. "It's not that bad!" he insisted. I shot him a dirty look, "You had one sip. I have to drink three quarters of the bottle!" And the bottle probably holds a half gallon of liquid.
An hour goes by very slowly in a cancer hospital, whether you're waiting for a test or results of one. My mom tried to keep my mind off my reason for being there by talking about absolutely anything else, but it was no use. Each time another bald, sickly or mask-wearing patient staggered by I was shot right back into the world of cancer, and I wanted to be anywhere but there. Soon, a couple entered the waiting room. They were probably in their 50s and, while she dressed as any other woman of her age, her husband was donning a rock and roll t-shirt and sweatpants. He joked loudly with the man who'd escorted him to the seating area and I could tell he was the type to make any situation seem funny and light, though we all knew this one wasn't. The man commented on my tasty drink and, as the conversation ensued, we found out he was there for a PET scan. "Non-hodgekins lymphoma," his wife explained. "He was clear for thirteen years and it just came back." Her words hit me like a bullet to the chest. Thirteen years? Here I was, hoping for three, assuming if I get to five I'd be in the clear. But, no. This man was a harsh reminder that this disease can trick you and wait for you to feel safe before coming back to knock you right on your ass.
That's when I saw a very familiar family enter the room. My parents have known them for at least 25 years and I went to school with their daughter. "Mom, look," I pointed them out to her just as they turned and spotted us. "Oh, hi!" said the woman, trying to force a smile. I couldn't help but wonder which one of them was the patient. Then she looked at me, knowing my history, and said, "You look great. Really great." I thanked her and said, "Not exactly the place you want to bump into people you know." Within a few minutes we found out it was her husband who had cancer, though I didn't ask what kind. The two of them and their daughter seemed completely overwhelmed with fear, understandably. When they finally excused themselves to go fill out paperwork the wife, once again, said to me, "You look great. Really great." I thanked her before getting back to my fruit punch.
And then it was my turn. I followed the faceless nurse into small room with a green chair and a sink; the same one I see in my nightmares. I sat down, spelled my name, told her my date of birth, confirmed I was not wearing a bra with an underwire and assured her I was 100% sure I was not pregnant, then she asked, "Which arm is better for your IV?" The IV would be used to shoot another type of contrast dye into my vein halfway through the scan. "My veins are terrible," I said, thinking I really need to make a recording of this speech. "I have one good one in my right arm, but it has a lot of scar tissue from overuse." I swear, every three months I relive the exact same scenario, over and over again. It's like the movie, Groundhog Day. She was able to find a vein in my left arm and started some fluids to get me hydrated before leaving me alone to wait for the radiology tech to come get me. I listened to the sounds of the CT machine across the hall, swirling around its current victim. Then the room went silent before the voices wished the man good luck and sent him on his way. "Who do we have next?" I overheard the tech ask from the scan room. "Suzanne Kane," someone answered. They obviously had no idea my bionic ears were tuned into their conversation when the tech spoke in an announcer's voice, "Big. Daddy. Kane!" I shook my head and debated whether or not to mention it when he came out a minute later, but I definitely wasn't in the mood for a joke and a giggle.
The tech gave me instructions about getting up onto the table with my head on the pillow and blah, blah, blah. I knew the drill. He covered me with a sheet so I could pull my jeans down to my knees so the button and zipper wouldn't affect the pictures then he left the room to start the test. I lifted my arms above my head, closed my eyes and waited for the table to move me slowly into the tube of misery. Here we go. I thought while simultaneously praying to God for no evidence of disease. "Breathe in!" commanded the recorded voice I knew so well. "Hold your breath!" The table shifted again. "Breathe!" One more time through that little exercise and I was moved out of the black hole to wait for my injection. The nurse came in and squeezed my hand sympathetically. "How are you doing?" she asked. "I guess I'll find out," I answered for the second time that day. "It'll be fine!" she said with that positive tone anyone who's never had cancer tends to use. "It needs to be fine," I insisted. "I'm having a baby next month." She was speechless as she stared at my flat stomach underneath the sheet. "Not me, exactly," I explained. "We have a gestational carrier in Minnesota." She was so interested in what I was saying that I wasn't sure she even remembered why she was in the room until I felt a warm sensation all over my body that told me the dye was running through my veins. "Good luck with everything," she said then she hurried out before the scan began again.
"Breathe in! Hold your breath! Breathe!"
Three more pictures were taken before the table backed out and a female tech came to unhook my IV. "I just heard you're having a baby with a gestational carrier!" she said with genuine excitement. "That's so amazing!" I nodded and made some sort of comment about needing the test results to be ok before I'll allow myself to get too excited. "I know you're going to be ok," she said. "If I had champagne, I'd toast with you right now. To new beginnings!" I didn't want to allow myself to get my hopes up because I knew she wasn't a radiologist. She doesn't write the reports, she just takes the pictures. I'd have to wait for the doctor.
I collected Jimmi and my mom and walked down one flight to check in at Dr. L's office. The waiting room was so full there were people spilling out into the hall. "Are you having a party?" I asked the receptionist who cracked a slight smile and told me to have a seat. I knew I had a little bit of time so I took a detour to the ladies room where I ran into our family friend again. She seemed surprised to see me as she exited the stall and, once again, the only words she spoke to me were, "You look great. Really great." At that point I figured she was in shock over her husband's diagnosis and just didn't have the strength to say anything more. Either that or two and a half years of new hair growth is really working for me! When I got back to the waiting room my second favorite nurse was waiting for me. "Hi!" she gushed. "How much longer?" I knew exactly what she meant. "Five weeks," I told her. She clapped her hands and double checked, "Girl, right?" I confirmed her thoughts as she led us to an exam room. "I really need everything to be ok," I said for the billionth time that day. "It will be! I know it." She took my vitals and told me to get naked from the waist down. As she opened the door to leave she almost walked right into my favorite nurse. "And here's Nurse L," she said. Nurse L is the one I'm closest to and the one I call with all my questions. She calms me, she answers me, she listens to me and I can tell she truly cares about me. "When's the baby coming?" she beamed upon entering. "Five weeks," I said again. "Well," she said, holding a report up in her hand. "Here's our gift to you." I was hoping she meant what I thought she meant and, before I could ask, she let me off the hook. "Everything looks good! Scan is clear!" Tears lined the rims of my mom's eyes and Jimmi's smile matched mine. "Really?" I asked. "Yes! But don't tell Dr. L I told you. He likes to be the one to give the good news." she said with a wink. "Now let's hurry up and have that baby. I feel like she's been pregnant FOREVER!"
Dr. L joined us about fifteen minutes later. "Scan looks good," he said. "But I'm sure you already knew that, right?" I tried to act surprised but he knew better. He got into position for my internal exam, which I was dreading. For most women, a pelvic exam is no big deal. In, out, done. Well, not for a woman who's had radiation damage to that area. For us, as the speculum opens, it feels like we're being torn apart. And, without regular…ummm…exercise to the girly parts, everything starts to shrink, making it difficult to get anything in there. That's why a dilator is prescribed for us, the lucky members of the vaginal stenosis club. It's basically a medical dildo used to keep everything happy down there. But I fucking hate that thing! It's hard plastic, it's not fun and it's a constant reminder of cancer. Whenever possible, I take part in the real thing. But, with Jimmi in and out of the hospital for the last month, it hasn't really been very hot and heavy at my house lately. "Before you get in there I want to warn you it's gonna be really tight. Please don't hurt me!" He gave me a puzzled look before I explained Jimmi's bad luck. "What about the dilator?" he asked. "I fucking HATE that thing!" I said. He finished the exam, told me everything looked good then he looked down at the blood on his glove and said, "You need to use that dilator. It's only gonna get worse."
Dr. L glanced at my chart and marveled over the fact that it's been three years since diagnosis. I know he's proud of himself for saving my life. We both know I'm a walking miracle. He told me he'd see me in three months, wished us luck with the baby then left the room. I turned to Nurse L, "Will he move me to six months soon?" She shook her head, "No. You need to come here every three months. Six is too long." There will never be a safety zone for me. Then she added, "You know, you don't have to use the dilator." My expression changed. "Grab one of your girlfriends and hit the sex shop! Get yourself a toy! You might even be able to push it through insurance." The thought of filling out a form to be reimbursed for a JackRabbit made me giggle. I set up my next appointment for July 18th and my mom, Jimmi and I left the cancer center. When we got outside my mom turned to me, breathed a sigh of relief and said...
"Ok! Bring on that baby!"
"There was some cancer there…"
From my gynecologist's nonchalant choice of phrasing, it sounded as if I had a spot of mustard on the corner of my mouth, left over from that afternoon's turkey sandwich. One swipe of a moistened napkin and I'd be good to go! But, no such luck. The rare and aggressive form of "some cancer" left me without a uterus, fallopian tubes, ovaries, and, for awhile, hair. I was told not to Google Small Cell Neuroendocrine Carcinoma of the Cervix, and I obliged…for a little while. After piecing together small bits of the seriousness of my disease from a Facebook support group consisting of the few others around the world, still alive, with the same ailment, I finally learned the horrifying facts. Even if I completed my surgery, four rounds of intensive chemotherapy and 28 rounds of brutal pelvic radiation, the likelihood that the cancer would come back, take over my major organs and kill me in the next five years would be 85%.
I probably wouldn't play those odds at a casino.
But, here I am, still breathing, living in three month intervals from CT scan to CT scan. It's not the most relaxing way to live but it's my new normal. A few times, my gynecological oncologist thought about moving my scans to every six months, but he quickly rescinded his suggestion and put the orders in for his office to keep up the 90 day schedule. Clearly I'm not the only one who believes this beast could return at any time and he wants to keep right on top of it if it does. But I know just as well as he does, if the demon comes back, I'd be in for a fight that I may not win a second time.
My CT scan, which covers my chest, abdomen and pelvis, was scheduled for March 21, 2014, but Dr. L's office called to move it to April 11, 2014 because he was going to be out of town. Knowing I'd have to wait an extra three weeks turned my stomach in knots and I didn't know if I'd find enough to keep my mind occupied so I wouldn't go absolutely crazy during that time. Little did I know Jimmi would be in and out of the hospital for the last four weeks, which really helped to divert some of my worrying. Thankfully, he was released on Thursday and seems to be doing much better. So the stress turned back to my appointment the following day.
Jimmi and I headed over to the cancer center an hour before my scheduled time because I needed to drink the sticky sweet contrast dye before the test. My mom was just getting out of her car when we pulled into the lot and the memories of the three of us walking in and out of that building almost every day for four months were immediately triggered. The smell of the foyer stopped me in my tracks as I swallowed hard to keep from gagging. I stepped into the familiar lobby and was greeted with a wave and a smile from the friendly receptionist, whose name I've never managed to ask in the last three years. "How are you?" she beamed from behind her desk. "I guess I'll find out," I replied, as I do every three months. We walked up one flight of stairs to the radiology department and I checked in and waited for the clipboard with the paperwork I'm asked to fill out each time I visit. "You can keep the information about the test and the contrast dye," I said. "I know it all by now." I took a pen and went to sit with my mom and Jimmi in the waiting area. After I'd filled out the one sheet asking if I had any allergies, if I'd ever had a CT scan with contrast before, and what medications I was currently taking, I flipped the page and was surprised the second one I see each time wasn't there. "No way!" I exclaimed with joy. "They didn't give me the 'Are you pregnant?' sheet this time! Maybe they finally marked it in my chart that it's physically impossible to get pregnant without a uterus." After three years of complaining to the people at the desk that I shouldn't have to answer that question every time since the answer will never ever change, they finally listened! I walked back up to hand in my completed questionnaire and the receptionist said, "Wait right there a second. I forgot to give you the other sheet." Seriously? "Is it the 'Are you pregnant?' one?" I asked and the man nodded with a smile. "It's only the one question. It won't take long," he said, thinking that would make things better. I wasn't in the mood to ask for my chart to be marked "she will NEVER be pregnant" again, so I checked the box next to "I am sure I'm not pregnant" and went on with my life.
I heard my name being called a few minutes after I sat down and I raised my hand and announced, "here!" as if the teacher was taking attendance at school. The tech brought over the dreaded drink with my named typed nicely on a printed label, shook it, removed the top, and placed it in front of me with a straw. "It looks so dark," I commented on the color that was usually a watery red but now appeared a deep scarlet. "Yeah, we changed the flavoring. It's still raspberry but we use a different mix. People say it's not as sweet," she said. I sure hoped the "people" were right. I brought the straw to my lips and sucked in the first taste of the contrast dye. My face cringed from the sugary fruit punch that I wouldn't drink voluntarily if it was the last liquid on Earth, and I cursed the "people" who had gotten my hopes up about the toned-down flavor. "Let me try it," said Jimmi, holding out his hand. I gave him the bottle and he took a swig. "It's not that bad!" he insisted. I shot him a dirty look, "You had one sip. I have to drink three quarters of the bottle!" And the bottle probably holds a half gallon of liquid.
An hour goes by very slowly in a cancer hospital, whether you're waiting for a test or results of one. My mom tried to keep my mind off my reason for being there by talking about absolutely anything else, but it was no use. Each time another bald, sickly or mask-wearing patient staggered by I was shot right back into the world of cancer, and I wanted to be anywhere but there. Soon, a couple entered the waiting room. They were probably in their 50s and, while she dressed as any other woman of her age, her husband was donning a rock and roll t-shirt and sweatpants. He joked loudly with the man who'd escorted him to the seating area and I could tell he was the type to make any situation seem funny and light, though we all knew this one wasn't. The man commented on my tasty drink and, as the conversation ensued, we found out he was there for a PET scan. "Non-hodgekins lymphoma," his wife explained. "He was clear for thirteen years and it just came back." Her words hit me like a bullet to the chest. Thirteen years? Here I was, hoping for three, assuming if I get to five I'd be in the clear. But, no. This man was a harsh reminder that this disease can trick you and wait for you to feel safe before coming back to knock you right on your ass.
That's when I saw a very familiar family enter the room. My parents have known them for at least 25 years and I went to school with their daughter. "Mom, look," I pointed them out to her just as they turned and spotted us. "Oh, hi!" said the woman, trying to force a smile. I couldn't help but wonder which one of them was the patient. Then she looked at me, knowing my history, and said, "You look great. Really great." I thanked her and said, "Not exactly the place you want to bump into people you know." Within a few minutes we found out it was her husband who had cancer, though I didn't ask what kind. The two of them and their daughter seemed completely overwhelmed with fear, understandably. When they finally excused themselves to go fill out paperwork the wife, once again, said to me, "You look great. Really great." I thanked her before getting back to my fruit punch.
And then it was my turn. I followed the faceless nurse into small room with a green chair and a sink; the same one I see in my nightmares. I sat down, spelled my name, told her my date of birth, confirmed I was not wearing a bra with an underwire and assured her I was 100% sure I was not pregnant, then she asked, "Which arm is better for your IV?" The IV would be used to shoot another type of contrast dye into my vein halfway through the scan. "My veins are terrible," I said, thinking I really need to make a recording of this speech. "I have one good one in my right arm, but it has a lot of scar tissue from overuse." I swear, every three months I relive the exact same scenario, over and over again. It's like the movie, Groundhog Day. She was able to find a vein in my left arm and started some fluids to get me hydrated before leaving me alone to wait for the radiology tech to come get me. I listened to the sounds of the CT machine across the hall, swirling around its current victim. Then the room went silent before the voices wished the man good luck and sent him on his way. "Who do we have next?" I overheard the tech ask from the scan room. "Suzanne Kane," someone answered. They obviously had no idea my bionic ears were tuned into their conversation when the tech spoke in an announcer's voice, "Big. Daddy. Kane!" I shook my head and debated whether or not to mention it when he came out a minute later, but I definitely wasn't in the mood for a joke and a giggle.
The tech gave me instructions about getting up onto the table with my head on the pillow and blah, blah, blah. I knew the drill. He covered me with a sheet so I could pull my jeans down to my knees so the button and zipper wouldn't affect the pictures then he left the room to start the test. I lifted my arms above my head, closed my eyes and waited for the table to move me slowly into the tube of misery. Here we go. I thought while simultaneously praying to God for no evidence of disease. "Breathe in!" commanded the recorded voice I knew so well. "Hold your breath!" The table shifted again. "Breathe!" One more time through that little exercise and I was moved out of the black hole to wait for my injection. The nurse came in and squeezed my hand sympathetically. "How are you doing?" she asked. "I guess I'll find out," I answered for the second time that day. "It'll be fine!" she said with that positive tone anyone who's never had cancer tends to use. "It needs to be fine," I insisted. "I'm having a baby next month." She was speechless as she stared at my flat stomach underneath the sheet. "Not me, exactly," I explained. "We have a gestational carrier in Minnesota." She was so interested in what I was saying that I wasn't sure she even remembered why she was in the room until I felt a warm sensation all over my body that told me the dye was running through my veins. "Good luck with everything," she said then she hurried out before the scan began again.
"Breathe in! Hold your breath! Breathe!"
Three more pictures were taken before the table backed out and a female tech came to unhook my IV. "I just heard you're having a baby with a gestational carrier!" she said with genuine excitement. "That's so amazing!" I nodded and made some sort of comment about needing the test results to be ok before I'll allow myself to get too excited. "I know you're going to be ok," she said. "If I had champagne, I'd toast with you right now. To new beginnings!" I didn't want to allow myself to get my hopes up because I knew she wasn't a radiologist. She doesn't write the reports, she just takes the pictures. I'd have to wait for the doctor.
I collected Jimmi and my mom and walked down one flight to check in at Dr. L's office. The waiting room was so full there were people spilling out into the hall. "Are you having a party?" I asked the receptionist who cracked a slight smile and told me to have a seat. I knew I had a little bit of time so I took a detour to the ladies room where I ran into our family friend again. She seemed surprised to see me as she exited the stall and, once again, the only words she spoke to me were, "You look great. Really great." At that point I figured she was in shock over her husband's diagnosis and just didn't have the strength to say anything more. Either that or two and a half years of new hair growth is really working for me! When I got back to the waiting room my second favorite nurse was waiting for me. "Hi!" she gushed. "How much longer?" I knew exactly what she meant. "Five weeks," I told her. She clapped her hands and double checked, "Girl, right?" I confirmed her thoughts as she led us to an exam room. "I really need everything to be ok," I said for the billionth time that day. "It will be! I know it." She took my vitals and told me to get naked from the waist down. As she opened the door to leave she almost walked right into my favorite nurse. "And here's Nurse L," she said. Nurse L is the one I'm closest to and the one I call with all my questions. She calms me, she answers me, she listens to me and I can tell she truly cares about me. "When's the baby coming?" she beamed upon entering. "Five weeks," I said again. "Well," she said, holding a report up in her hand. "Here's our gift to you." I was hoping she meant what I thought she meant and, before I could ask, she let me off the hook. "Everything looks good! Scan is clear!" Tears lined the rims of my mom's eyes and Jimmi's smile matched mine. "Really?" I asked. "Yes! But don't tell Dr. L I told you. He likes to be the one to give the good news." she said with a wink. "Now let's hurry up and have that baby. I feel like she's been pregnant FOREVER!"
Dr. L joined us about fifteen minutes later. "Scan looks good," he said. "But I'm sure you already knew that, right?" I tried to act surprised but he knew better. He got into position for my internal exam, which I was dreading. For most women, a pelvic exam is no big deal. In, out, done. Well, not for a woman who's had radiation damage to that area. For us, as the speculum opens, it feels like we're being torn apart. And, without regular…ummm…exercise to the girly parts, everything starts to shrink, making it difficult to get anything in there. That's why a dilator is prescribed for us, the lucky members of the vaginal stenosis club. It's basically a medical dildo used to keep everything happy down there. But I fucking hate that thing! It's hard plastic, it's not fun and it's a constant reminder of cancer. Whenever possible, I take part in the real thing. But, with Jimmi in and out of the hospital for the last month, it hasn't really been very hot and heavy at my house lately. "Before you get in there I want to warn you it's gonna be really tight. Please don't hurt me!" He gave me a puzzled look before I explained Jimmi's bad luck. "What about the dilator?" he asked. "I fucking HATE that thing!" I said. He finished the exam, told me everything looked good then he looked down at the blood on his glove and said, "You need to use that dilator. It's only gonna get worse."
Dr. L glanced at my chart and marveled over the fact that it's been three years since diagnosis. I know he's proud of himself for saving my life. We both know I'm a walking miracle. He told me he'd see me in three months, wished us luck with the baby then left the room. I turned to Nurse L, "Will he move me to six months soon?" She shook her head, "No. You need to come here every three months. Six is too long." There will never be a safety zone for me. Then she added, "You know, you don't have to use the dilator." My expression changed. "Grab one of your girlfriends and hit the sex shop! Get yourself a toy! You might even be able to push it through insurance." The thought of filling out a form to be reimbursed for a JackRabbit made me giggle. I set up my next appointment for July 18th and my mom, Jimmi and I left the cancer center. When we got outside my mom turned to me, breathed a sigh of relief and said...
"Ok! Bring on that baby!"
Thursday, April 10, 2014
Joy and Pain
The e-mail arrived late last Thursday afternoon, an entire day before our flight was scheduled to depart Newark, NJ and take us to Minnesota where, after four months, a few medical emergencies and a canceled trip, we would finally see Lyndsay, her growing belly, and an ultrasound view of our baby, Aria. "Flight Cancellation Notice" read the subject line. "But it's supposed to stop by noon!" I whined, referring to the April snowstorm that was currently causing chaos in Minnesota. "We weren't even supposed to land until four!" I scoured my messages for another from United Airlines with rebooking information. There wasn't anything there. The last few times United had preemptively canceled my flight before it was totally necessary to do so, they'd automatically booked me on the next available flight that was still actually leaving the airport.
Not this time.
Being the forward thinker that I am, I had checked alternate flights on Wednesday, as soon as the Winter Storm Warning blinked its red headline across the weather page. If we still wanted to arrive in time to have pregnancy photos taken with Lyndsay on Saturday, there was only one option available at 8:00 AM the same day. And, the last time I'd looked online, there were only two seats left on that flight. I grabbed the phone and dialed quickly. I was relieved when the reservation specialist who answered the call spoke to me in clear English, without any detectable accent that might make the conversation difficult. In less than five minutes the last two seats on the 8:02 AM flight from Newark to Minneapolis were assigned to Jimmi and me and I hung up with a sigh of relief. As much as it was going to suck leaving the house at 5:45 AM, I was glad we had a new plan. I went down the list of phone calls I needed to make to continue the change. I notified Lyndsay first, then my friend, Jenn, who was going to take the boys after school until their dad could pick them up, then I texted their dad to let him know he would be picking them up from me. I called the car service to give them our new flight info so they could get us to the airport on time, I rang the car rental company to ask them to hold our vehicle until the morning and, finally, I spoke to Marriott about our hotel room, which we had to keep for that night anyway if we wanted to be guaranteed check-in early in the morning.
On Friday morning, as I was getting the boys ready for school, I checked the latest weather update in Minneapolis. The red warning had been removed and it seemed there were only a few scattered flurries left in the area. I shook my head in annoyance at the fact that United had jumped so quickly to cancel my original flight, which obviously would've arrived hours after the last flake had fallen. Then I remembered the last time United had canceled my flight they were able to rebook me on Delta at no extra charge. I immediately pulled up the day's Newark to Minneapolis flight schedule on Delta.com. The long list of departures, every two hours or so, appeared before my eyes with green status bars announcing "on time" next to each one. It was 7:30 AM, at that point, and the earliest flight was leaving at 9:00. I called Delta to make sure the planes were actually taking off since United seemed to think the snow was causing the world to end. The agent who answered the phone assured me that, not only were the flights all still going out, they were all currently on schedule. I thanked her, hung up and called United to plead my case. A few sob stories and an understanding agent later, we were booked through United on a Delta flight leaving that evening at 6:38 PM. Of course, I had to then call Delta to request a seat with extra legroom for Jimmi and a wheelchair escort in the airport. I then had to get back on the line with the car service, rental car agency, my friend who I now needed to watch the boys again and the boys' dad.
Shortly thereafter, Jimmi returned from his early-morning follow-up with the surgeon who had removed the infection from his knee. His stitches were gone and replaced with butterfly tape. He was still limping but moving a bit more freely. "The car is coming at three forty-five," I said. "We need to pack." Deciding what to bring was easy, for the most part, except that Jimmi was still living in shorts due to pain and swelling in his leg. "You're gonna be cold," I stated the obvious, realizing there wasn't much he'd be able to do about it. Then the control-freak in me spoke up, "Do you think you'll be able to squeeze into jeans for the pictures?" My husband gave me a look that told me he was not in the mood for my criticism, but I pushed my luck anyway. "I don't have a problem with shorts, if you have to, but jeans will look much better in the photos." As he threw another pair of shorts into our suitcase I suggested, "Why don't you bring one pair of jeans, just in case." He grumbled audibly as he grabbed the pants from his shelf and tossed them into the bag.
The car arrived a few minutes after I'd counted out and packed up a small cooler bag with 20 antibiotic bulbs and four ice packs and a messenger bag with 20 alcohol wipes, 40 syringes of saline and 20 syringes of Heparin. We loaded up the car with one large suitcase and a small suitcase filled with gifts for Lyndsay and her family. "Have everything?" asked the driver. I went through a checklist in my head before answering, "Yup!" And off we went. But just as we were getting onto the highway I exclaimed, "Shit!" Jimmi, startled, looked up from his phone. "I forgot the baby shoes and ultrasound photo the photographer asked me to bring for the pregnancy portraits!" Jimmi shrugged, clearly not understanding the emergency, and returned to his never-ending online quest to find the ultimate drum set for his collection. "We can always stop at Babies R Us and get shoes before the shoot tomorrow," I said out loud, mostly to myself. "But the ultrasound photo...Wait! I have one on my phone! I'll e-mail it to her. She can probably print it out, right?" Jimmi nodded, "I'm sure she can."
We continued on the highway and I wanted to speak up as the driver passed the exit for the most direct route to the airport, but Jimmi assured me he must know a different way to go. If I had known that "different way" was right through the heart of Newark, during rush hour traffic, I wouldn't have held my tongue. The car stopped and started and stopped and started as we jerked back and forth, light after light after light. My patience was wearing thin and my stomach was becoming increasingly queasy until we eventually made it to the airport.
I wrapped the cooler bag of medicine around my body and estimated its weight at about 15 lbs. I then grabbed my pocketbook, which wasn't exactly lightweight either, and tilted the large suitcase on its side so I could wheel it along. I allowed Jimmi to pull the small suitcase as he limped slightly behind me. Within seconds of typing our confirmation number into the airport kiosk a man with a red wheelchair appeared and signaled Jimmi to sit down. My husband's face turned six shades of embarrassed as he dropped down into the seat and allowed the porter to strap him in.
I finished check-in for both of us then the wheelchair driver led us to the security line, where we were given VIP access. Not exactly the type of backstage pass I'm used to, but it didn't hurt. Jimmi got up from the wheelchair and all of our bags were placed on the belt for us. He was scanned first but I waited by the belt for the bags to go through because I knew there'd be questions. Predictably, the belt came to a halt on the cooler bag. The guard carefully stared at the X-ray monitor, which presented a plethora of paraphernalia which needed to be identified. "It's IV antibiotics," I explained. The scanner didn't acknowlege me as he waved another guard over with his hand then pointed to the suspicious bag with brightly colored polka dots. "I need to look in the bag, ma'am." Said rent-a-cop #2. I nodded and repeated, "It's antibiotics. I have a doctor's note if you'd like to see it." He shook his head and said, "It's fine. I just need you to go through the detector then come with me, please." Was I in trouble? I stepped into the scanner and held my hands over my head as the machine took three seconds to circle my body. When it was confirmed that I would not pose a threat to those around me I was called to a table where the guard unzipped the cooler and asked, "Is there anything sharp or dangerous in here that could hurt me?" I held back every sarcastic remark that was itching to erupt from my mouth. "Nope. The lines just connect into his PICC by twisting them together." He nodded as if he'd seen these types of medications before. After a few swipes back and forth we were back in business, rolling down to the gate.
Once our escort dropped us off, there was just enough time for me to grab a couple of sandwiches before the boarding process began. Or, so I thought. When I returned with the food I noticed our departure time had changed from 6:38 to 7:00. Not a big deal. It just meant we'd have to give Jimmi his infusion more publicly, at the crowded gate, instead of in our own row on the airplane. I walked over to Jimmi, set the bag of food on the seat next to him and broke the news. "Flight is delayed. We need to do your meds now." Without another word I started to set up a drug laboratory using our carry-on suitcase as a table. I lined up the two saline syringes, antibiotic bulb and Heparin syringe in S.A.S.H. order then squirted sanitizer onto both of our hands. Jimmi pulled down the mesh cuff that holds the long tube in place so it doesn't dangle all around his arm. I ripped open an alcohol wipe and proceeded to clean off the end of the tube that attaches to all the infused liquids, allowing them to travel up the line, directly into a vein leading to his chest. The woman to Jimmi's left stared, horrified by what she was witnessing only one seat away. The woman to my right was speaking loudly into her phone until she caught sight of my husband shooting up beside me. She jumped out of her seat and changed her tone to a whisper as she hurried off to the window to tell the recipient of her call about the tattooed man who must be dying of some terrible disease caused by sharing dirty needles and engaging in promiscuous sex. Forty minutes later the last syringe had been squeezed, the mesh was holding the line in place again, our food was gone and our flight still hadn't started boarding. It was now 7:15 PM, fifteen minutes later than our first delayed departure time. But I didn't care. As long as we arrived safely that night, I was fine to wait. A new escort with a wheelchair arrived barely five minutes later and motioned for Jimmi to hop in. "Let's go, Mr. Kane. You get to board first." I followed as he was wheeled down the gangway and released at the door to the plane.
The aircraft filled up relatively quickly, as everyone was anxious to get in the air already. The flight attendant announced the closing of the main cabin doors, signaling preparation for takeoff. But we didn't take off. Actually, we didn't move at all. "What's going on?" asked a passenger a few rows in front of us about 30 minutes later. No one could give us an answer but it didn't seem to matter. We finally started moving away from the gate and out to the runway. Until we stopped again. Five, ten, twenty, thirty minutes turned into an hour and we still had only moved a short distance from the terminal before resuming our resting position. That's when the baby next to us decided she'd had just about enough and started screaming her five month-old brains out. "Awwww," I said and looked at Jimmi longingly. I could actually see the sweat starting to bead up on his forehead as the piercing wails penetrated the tiny airplane's understood code of silence. "Is that what I have to look forward to?" he asked me as his body tensed up and his heart started pounding outside his chest. All I could do was laugh. "Yup!" Another half an hour later, the baby had finally quieted down and the captain finally decided to make an announcement, "Hi folks. Sorry about the delay. There's a lot of construction going on at the terminal and there's only one runway currently open for use. That means all the airplanes have to take off and land on the same runway and it's causing quite a backup." The moans came in unison from the cabin. The pilot continued, "We're currently number fifteen in line to take off, but since they need to squeeze in the landing flights, too, it will slow the process down a bit more. We're looking at another forty-five minutes to an hour." More moans and some swearing. "Why did you put us on the plane ninety minutes ago if we weren't gonna be able to leave for another hour?" an angry passenger yelled at a helpless flight attendant. "We needed to secure our place in line if we want to get out, Sir." The captain came back over the speaker, "And one more thing, folks. You're free to use your cellular devices at this time, but please do not get up and move about the cabin. That will delay us further and we'll lose our place in line. Please just sit tight and wait until we're cleared to take off." Awesome. Not only were we looking at a total of about two and a half hours of being trapped in what felt like a steel coffin, but we weren't even allowed to move from our seats to stretch our legs. "I guess I should make some calls," I said to Jimmi as I opened my e-mail to find the phone number for the rental car agency. "Hi, I was supposed to pick up a car in five minutes but my flight hasn't even left the airport yet," I explained. The representative asked for my name and my confirmation number and then, "What time will you be landing now?" Oh, how I wished I knew the answer to that simple question. "I have no idea," I said with exasperation. "We've been told we're leaving in thirty minutes three times in the last hour and a half. And that doesn't include the first hour when they weren't telling us anything at all. If I had to guess, I'd say midnight?" The agent typed away on her keyboard. "Hmmm, the rental desk at the Minneapolis Airport location closes at eleven."
Of course it does.
"Ok, well, I won't be there by eleven. How will I get my car?" I asked, clearly not in the mood for any other complications, and internally regretting my earlier thoughts of, "I don't care if we're delayed as long as we arrive safely, tonight." The rep asked if she could put me on hold for a moment to find out if the rental desk would stay open long enough to wait for my arrival. "Yes, I can hold if it's quick. We're on the runway and we could leave at any moment." She told me she understood before the sleepy hold music took over the line. It wasn't long before she returned to tell me, "Hertz will honor your reservation and they're open all night." It was too simple of a solution to believe so I asked for her name, which I had her repeat three times and still couldn't understand, then I thanked her and hung up. I then called the hotel to make sure they wouldn't give our room away and, last, my parents, who would worry if they didn't hear from me soon. "Hi," I said when I heard my mom's voice. "How's the weather out there?" She asked. "I dunno. We're still in Newark." There was silence on the other end of the line until, "Weren't you supposed to land a few minutes ago?" I confirmed her thoughts then explained the whole situation. By the time I'd finished telling my tale of woe, the captain announced our departure and the plane began to move. "I have to go!" I said abruptly. "Leaving now!"
Jimmi had his next dose of medicine on the plane...
And I had mine...
As predicted, we touched down in Minneapolis at exactly midnight, which was actually 1:00 AM, EST, and we were already exhausted. We disembarked the aircraft and found the next porter waiting to wheel Jimmi around, and he was slightly less embarrassed when he sat in the chair this time. The escort tried to make smalltalk with us but I was too tired and annoyed to try and be nice so I one-worded him, hoping he'd just stop. No such luck. I was able to break free from his conversational hold for a few seconds when I insisted he stay with Jimmi while I collected our bag from the carousel.
The Minneapolis airport is enormous but I've learned my way around over the last few months. When the porter got lost looking for the terminal shuttle then insisted I ignore the clear sign for Hertz on the second floor and exit the elevator on the third, I'd had enough. Once we were back down on 2, where we obviously belonged, Jimmi assured the man that he would be ok sitting on the bench by the rental desk while I secured our car. We thanked him and sent him on his way. It was now 1:00 AM, but definitely 2:00 in my brain, and I was quickly running out of steam when I approached the too-cheery-for-that-hour desk agent. "Hello!" She sang with a toothy smile. I explained my situation and she was able to find my reservation and, as promised, honor it. "What brings you to snowy Minnesota tonight?" asked Little Miss Sunshine. I considered answering with a simple, "visiting" so I wouldn't be forced to answer the barrage of follow-up questions that would inevitably come if I told her the real reason, but the desire to see the look on her face when she heard the truth took over and I blurted out, "My husband and I are having a baby with a gestational carrier who lives here, so we're coming to visit her and see our baby." If only I could hire a hidden photographer to capture moments like this, I'd be able to enjoy them for years to come. "Well...I...wow," were the sounds that came out first, followed by the start of her twenty questions, "Is it someone you know?" I answered honestly, "We know her now."
And then the verbal diarrhea began:
"Are you scared she'll want to keep the baby? Is it expensive? Do you like her? Does she have her own kids? Is she married? When is she due? Do you get to take the baby home right away? Is she giving birth in Minnesota? Will you be here for the birth?"
Let me see…
"No. Yes. Yes. Yes. Yes. May. Yes. Yes. I sure hope so."
When we finally returned to the actual reason I was standing there I was asked to sign a few screens with an electronic pen, hand over my license and a credit card, and make sure I didn't want to buy additional insurance on the vehicle. "No, my insurance will cover everything," I said. But she pushed some more, "Are you sure you don't want to take advantage of our worry-free guarantee? For just eighteen dollars a day you can walk away from any damage to the car, no matter how big or small, with just a signature." I knew I was only paying $11 a day to rent the car to begin with and I also knew my insurance would take care of any damage, but I wasn't in the mood to argue and, with the way things had been going lately, I didn't think it would be smart to tempt fate, so I gave in and excepted her sales pitch. "Ok, I can't seem to find a compact car with a GPS, as you requested, so I'm going to upgrade you for no extra charge. How's a Volkswagen Passat?" I shook my head at the sheer luck that we'd end up in Jimmi's favorite car brand, Volkswagen; the brand I insult and tease him about on a regular basis. "It's fine," I said. "My husband will be very happy."
Key in hand, I walked to the bench to collect Jimmi and our bags and finally get on the road. We still had almost a 90 minute ride ahead of us. We got situated in the powder blue VW, set the navigation to lead us to our hotel and we were on our way. Within 30 seconds I realized there was a problem. "Stay in your lane!" Jimmi scolded. "I can't see!" I snapped back. "Are your lights on?" I gave him a look that told him I wasn't as stupid as he thought before answering, "They're on but they're the same lights that were on my Volkswagen and they SUCK!" He growled, "Put your high beams on." I looked around at the mostly empty road before clicking the handle to brighten the headlights. "Oh, that helps," I said sarcastically, noticing quickly that the car's high beams were no brighter than a normal car's regular lights. But, instead of seeing only two feet in front of us I could now see about five. I guess that was better than nothing. With every curve of the road Jimmi would shriek, "Watch out!" or "What are you doing?" I was ready to tape his mouth shut when he yelled, "Suzanne, TURN!!" I was almost on top of the cows in the grassy pasture that hugged the road before I could see that the pavement curved left and I was aiming perfectly straight. "Shit!" I screamed as both hands turned the wheel left and saved us from making our own hamburgers. "Pay attention!" Jimmi commanded and I yelled back, "I am! I can't see!" He was sick of my excuses, "Do you want me to drive?" he asked. "You can't," I said. "I didn't put your name on the contract because of your leg." The legality of that detail didn't matter much to him but I refused to switch seats, just in case. I continued driving the dark roads like a grandma on her way to church on Sunday before realizing, "There aren't any reflectors in the road. That's why I can't predict where it will turn ahead of me. It's so dangerous!" I crawled along, making the long ride even longer until, finally, we reached the hotel at 2:30 AM.
I rolled out of bed at 11:30 on Saturday morning, still not feeling refreshed. I showered and blew my hair out straight, packed up my makeup, cute shoes and a picture-worthy outfit, then I emptied the contents of the small carry-on suitcase onto the couch in our hotel room. I separated the stash in front of me and filled two small, pastel, egg-decorated gift bags with Easter candy and a third, slightly larger, bunny gift bag with Lyndsay's favorites, chocolate mini-eggs, and a pink t-shirt with the words "Extreme Babysitting" printed in white, above an arrow pointing down to the belly. Then I folded the 4 year-old-sized Princess Elsa dress and stuffed it, along with a matching Princess Elsa tiara, into a larger bag with cut-out words reading "Birthday Girl." I was proud of myself for finding those items at face value (actually, my mom found the tiara) because, with the world going crazy over the movie Frozen, people are paying five times as much online for the same princess-wear. Last, I gathered up a pile of papers, one in a frame, and a small chalkboard that my friend, Jenn, had decorated and put them all into a large bag with Mickey Mouse, Goofy and Donald Duck gracing the outside. This was the gift I was looking forward to giving the most. This was the one I'd agonized over for months. I mean, really, how exactly do you repay someone who is carrying your baby for you? It's impossible. And, not only is Lyndsay's body going through Hell to give us a child, her husband and kids are along for the ride. All four of them have played a part in the last eight months and they all deserve something special. The thought of their faces when they opened the gift made me feel giddy with excitement and I hoped they would feel the same. I stuffed the last few sheets of tissue paper into the top of the bag and called out to Jimmi, "Ok, I'm ready!" He was just finishing packing up his cooler of antibiotics and syringes for the day then we grabbed the seven bags we needed and headed out to the car.
We were running behind schedule and we still hadn't eaten or stopped at Babies R Us for the baby shoes I needed for the pregnancy photos we'd be taking an hour later. Google gave us the the address we were looking for and we spotted a Panera along the way. We decided to stop there after our shoe excursion. I parked in the "Expectant Mother" spot at Babies R Us, because I can, and ran inside. Jimmi hobbled, slightly behind me, and I half waited for him to catch up. Within seconds I found the perfect pair of tiny pink and white sneakers tied with a twirly pink bow, ran up to the register, paid and exited the store in under five minutes. We grabbed our Panera to go and, finally, we were off to Lyndsay's house.
We arrived 30 minutes later to a little boy's face pressed up against the storm door. He started jumping up and down when he saw us and, soon, his little sister joined him to greet us. Their big blue eyes widened when they saw the mounds of gifts they knew would be theirs and I put them out of their misery pretty quickly. "This is for you," I told Hunter, handing him one of the Easter bags. "And this is for you," I told Hallie, giving out the other one. "But, wait! Does someone have a birthday coming up?" Hallie's almost four-year old face lit up as she announced, "I do!" which landed her another bag. The Elsa costume was removed in one yank followed by a gasp and immediate disappearance to her room, where she would transform herself into the Frozen star. "I have one for you, too," I told Lyndsay. She pulled out the t-shirt and four bags of mini-eggs with a laugh, "You want your kid to be all jacked up on sugar, huh?" The pitter patter of tiny feet signaled the return of Princess Elsa, who looked even more adorable than I thought possible.
"What's in here?" asked Hunter, attempting to sneak a peek inside the final, unopened bag. "That's a special gift for all of you," I explained. "But you have to wait until after Jimmi, Mom and I take our pictures so we have more time." He wasn't thrilled with the idea of having to wait, but he didn't make a fuss about it. I looked at the clock and realized we needed to get going if we wanted to be on time for our photo session. The photographer only lives a few doors down from Lyndsay and they're friends, but I didn't want to make her wait around all day. I threw on my new jeans, a coral tank top and a lightweight, white jacket. I applied more makeup than usual to avoid looking washed out in the photos then I grabbed my coral wedges with bows on the straps and exited the bathroom. "Your turn," I told Jimmi and he headed to the bathroom to attempt fitting jeans over his still swollen right leg. When he came out wearing the pants I was relieved. Although he didn't look comfortable, I was hoping he'd be able to deal with it long enough to avoid wearing short in the photos.
The weather outside was surprisingly beautiful and I was thankful I didn't have to freeze on the walk down the street. The photographer answered the door and introduced herself as Jenny. "Thank you so much for allowing me to be a part of your journey," she said as she led us up to her living room to choose one of the backgrounds that were neatly placed on the floor. While we looked through the choices I told Jenny about an idea I had. "I still haven't felt the baby kick and I'm hoping you can capture my face the first time I do." Jenny loved the idea and Lyndsay was prepared to stop whatever we were doing to let me grab her belly at the first sign of movement. Jenny brought us to a large window that would allow natural lighting for the photos. "I'm so sorry about my makeshift studio. The weather didn't exactly cooperate for outside photos, which I like much better." She was referring to the melting snow from the day before, which had caused a muddy mess on the warm spring day. I assured her we were fine with whatever accommodations she had for us, but we did face a few challenges. "Are you able to kneel?" she asked Jimmi, who seemed to be feeling more pain than he had a few minutes earlier. "I can try," Jimmi said, not wanting to make things difficult. "I usually photograph kids inside so my backdrops don't go higher than five feet," she explained. "If I want your faces in the shots you'll either have to sit or kneel down." We tried one pose, then another and another. The easiest ones were belly shots with only our hands showing, as we could stand for those. Jimmi was able to kneel on his left knee but, each time he did, his jeans would pull against his right knee and I could see him cringing in pain. "Can he sit on that box?" I asked Jenny and she pulled out the prop, which worked for a few shots. "Would it be better for you to sit on the floor?" Jenny asked. "Sure, I can sit," Jimmi replied. "It'll just take a second to get down there." I watched Jimmi descend slowly to the floor, followed by a very pregnant Lyndsay. I giggled while I watched the scene play out in front of me. "Can you get down on the floor?" I asked Lyndsay. She answered, "Getting down is fine. It's getting back up that'll be a problem!" The two of them had to make each move in small steps and I couldn't help teasing them by doing a few quick sit-and-stands to prove that I was the only one with full use of my body. "Oh, shut it!" Jimmi scolded jokingly. That's when Lyndsay's hand went to her belly and she urgently called me over so she could place my hand in the right spot. "Just wait a second," she said. "I'm sure she'll do it again." I stood there, motionless, feeling for any signs of life. And then it happened! A tiny little tap from the inside. "Oh my God!" I exclaimed. "Is she kicking?" Jimmi asked as he hurried over to join the hands-on-Lyndsay party, but Aria instantly stopped her performance and Daddy didn't feel a thing. We finally called it quits after close to an hour of awkward positioning which, in the end, made for such beautiful photos you'd never even know we weren't all standing comfortably upright. I am so thankful for Jenny Munson for her creative angles which resulted in these amazing memories:
When the shoot was over Jimmi went back to Lyndsay's house with her husband and kids, who were waiting for him outside on their golf cart. Josh dropped off Jimmi and Hunter and came back for me. I was sure I could walk the few houses up but Hallie insisted I sit down so she could jump into my lap. After they dropped me off they went back for Lyndsay. As I was walking into the house I heard the faint sound of a little boy crying and Jimmi ran to the door. "He took a little spill," he told me about Hunter. With both of his parents still up the road I went to assess the situation, which turned out to be a couple of scraped knees and a tiny wound on his left hand where he'd met the pavement after he tried to show Jimmi he could stay on his scooter if he rode it down the hill. I looked at Jimmi, who was surprisingly calm, then back at Hunter's pouty face. A single tear fell down his cheek and he sniffled as he waited for someone to fix him. "Ok, let's go into the bathroom," I said and they followed me. Hunter sat down on the toilet and I asked him where I could find a washcloth and some Band-Aids. He pointed to the closet and I pulled out the supplies. I handed the cloth to Jimmi and said, "Here ya go!" I watched as my husband ran some warm water on the towel then wrung out the excess. Without a second thought, he gently dabbed each of Hunter's knees which, luckily, had been covered by his pants when he fell. Then Jimmi moved on to Hunter's wounded hand. "Which one would you like?" I said to Hunter as I held up the two choices of colored bandages. He pointed to the green polka dotted one and I placed it on the counter for Jimmi to apply. With the ease of an experienced father, my husband finished wiping blood and dirt from the five year-old then stuck the colorful cover over the only place that actually needed it. "All good, Little Man!" Jimmi announced with a smile. Hunter popped up from the toilet and off he went. I was a pile of mush after watching Jimmi's actions. "You're gonna be a great daddy," I cooed.
Lyndsay, Josh and Hallie returned shortly, followed by Lyndsay's brother, who had popped in for a visit. A conversation about tattoos ensued and we teased Josh because he didn't have any. "I still want to have my eyeliner done when this is all over!" Lyndsay exclaimed, pointing to our baby bump. Months back, right before the embryo transfer, Lyndsay mentioned having an appointment to have her eyeliner tattooed on permanently. According to the surrogacy agency, that kind of procedure was not allowed so close to the transfer date so she was forced to cancel. Of course, after all was said and done, the fertility clinic never even asked Lyndsay if she'd had any recent tattoos after all. "I have no idea how you'll be able to do it," I said to Lyndsay. "How will you sit through someone tattooing around your eyes?" She responded with the laugh of a superhero, "Shit, if I can have a baby for someone else, I can get my damn eyeliner tattooed!"
Touchè!
The adults' conversation went on a little too long for the kids and they kept impatiently walking over to the remaining gift bag. "What's in here?" Hunter asked more than once until I finally agreed to tell them. "Ok, it's time to see!" I thought about how to reveal the family surprise and decided it would be best to pull out each item in a specific order so it would all make sense. "Stand here," I instructed to all four of them. "Now close your eyes." I reached into the bag and took out an 8x10 picture frame. "Keep your eyes closed until I say to open them," I instructed. "Hallie, hold out your hands but don't look until I tell you to." I placed the frame in her little hands then got myself ready with my camera. "Ok," I said. "Open your eyes!"
Lyndsay and Josh were able to read much more quickly than Hunter could sound out the words and their faces immediately lit up. Hunter caught on quickly enough and exclaimed, "Disney World? Are we going there?" Lyndsay confirmed his question and Hunter balled his hand into a fist, pulled it back in a swift motion and let out a, "YESSS!!!" then both kids started jumping up and down with excitement.
"But, wait!" I interrupted. "There's more!" I removed the small pile of papers inside the bag and explained each one. "After you get off the plane…" Hunter interrupted, "We're going on a plane?!" I nodded and continued, "A bus called 'Disney's Magical Express' will take you from the airport to your hotel." I held up the first sheet with a photo of giant dalmatian statues surrounding a building and a Fantasia-themed pool. "This is where you'll be staying. It's called 'Disney's All-Star Movies Resort.'" Hunter grabbed the paper from my hand. "Whoooaaa," he said. I went on, "I have something just for you, Hunter!" His blue eyes were enormous as he waited for what would come next. "You get to be a member of the The Pirate's League!" He didn't know what that meant yet, but he was giggling with excitement anyway. I handed him the next sheet of paper with the description of his special treat:
Get “Decked Out” Like a SeadogAvast! Captain Jack and his crew of scallywags are scouring the high seas in search of treasure—and new recruits! Sail away with The Pirates League, and transform ye self into a living, breathing swashbuckler from the days of olde.
First, be ye christened with yer Official Pirate Name from the leather-bound captain’s log. Then, make yer way o’er to the Muster Station, where the League’s veteran pirates will give you a marauder’s makeover as the adventurer of yer choosing:
- Your choice of facial effect: Cursed Pirate, Captain Hook, Captain Jack, Blackeyed Jack or shimmering makeup*
- Reversible bandana
- Earring and eye patch
- Sword and sheath
- The Pirate League bag
- Temporary tattoo
- Unique pirate coin necklace
- Personalized pirate oath
- Official pirate name
- Participation in a daily Adventureland Pirate Parade
"I have something for you, too, Hallie," I said to the little girl, who was patiently waiting her turn. "Bring your Elsa costume with you because you get to go to the Bibbidi Bobbidi Boutique and become a princess!" I handed her the description and Lyndsay read it to her:
A Fairy Tale Come to Life
With her magic wand—plus a few fashion tricks—your Fairy Godmother-in-training can transform you into a princess! It’s what you can expect at Bibbidi Bobbidi Boutique, owned by Cinderella’s Fairy Godmother and operated by her skilled apprentices.
Select your hairstyle then add make-up, nail color, accessories and a Disney princess costume, if your heart desires.
Magical Makeovers
Be the princess you want to be at Bibbidi Bobbidi Boutique. Whether you fancy a dash of glamour or to be ready for the ball, we have the perfect spell.
First, select the hairstyle of your choice:
- Fairytale Princess
- Disney Diva
- Pop Princess
- Color Star
You will receive:
The Crown Package
- Hairstyling
- Shimmering make-up, face gem
- Princess sash and tote
- Nail polish
I loved the looks of pure joy on their faces and I wanted it to continue. "And, after you become a pirate and you become a princess, guess where you'll eat dinner?" The kids looked as if they might explode if I didn't tell them soon, so I pulled out the next piece of paper and said, "Cinderella's Castle!" Hallie's dimpled cheeks turned pink and she shrieked, "Cindewella?!" I nodded and continued, "And one day you'll have breakfast at a place called Chef Mickey's with Donald Duck and Goofy and Mickey and Minnie!" There was more jumping up and down before I went on, "Then you'll go to a show called The Hoop-Dee-Doo Revue one night. It's a lot of fun!" I allowed the information I'd just bombarded them with to sink in before the minor disappointment would be revealed. While Lyndsay didn't know exactly what the surprise was going to be, I had checked the dates with her in advance. I had to make sure she and Josh would be available to take off from work on the specific days I was hoping to book, which I wanted to be during a slightly less busy season at the park. Also, I needed to make sure there was enough time before the trip to schedule the extras because they fill up quickly and Disney starts the process exactly 180 days before any given date. Yes, that means the trip won't be happening for another six months. When I told Lyndsay I wanted to reveal the gift during our visit I asked if I should tell the kids, knowing it's close to impossible for an almost four year-old and an almost six year-old to wait for anything. She answered, "Yes, tell them. We can work on teaching them patience!" I took the final item out of the bag and explained, "I know you're excited about the trip, but you're going to have to wait until October fifteenth. My friend made you a countdown calendar so you'll be able to see exactly how many days you'll have to wait. You can change the number every morning." I turned the decorated chalkboard over so they could see the number "192" above a very sad drawing I'd scribbled of Mickey Mouse. "That's a lot of days!" Hunter gasped. Lyndsay assured him they would go quickly and the two kids went back to celebrating.
Calendar with my sad drawing of Mickey Mouse
Calendar the next day, after I fixed the drawing!
Soon Lyndsay's parents arrived to take us all out to dinner. I felt like I was having a meal with my own family as we all sat around eating and talking and laughing. When we stood up to leave Lyndsay put her hand on her stomach and called out, "Jimmi! Hurry up!" He rushed over and placed his hand in the exact location Lyndsay was holding. "Whoa!" said my husband. "I think she just rolled over!" Lyndsay nodded and smiled. "That's crazy!" said Jimmi who had finally felt his baby's life with his own hand. A trip to Dairy Queen and drinks at Lyndsay's parents' house finished out the night before Jimmi and I began our drive back to the hotel.
"I've been feeling kinda shitty for the last hour or two," Jimmi said when we were alone in our rental car. Concern covered my face and I asked, "Shitty how?" Jimmi shrugged, "I keep going back and forth between hot and cold and I'm starting to feel achy in my hips. My knee is really bothering me, too." I tried to explain away his symptoms, "Well, the bed isn't very comfortable. That could be causing your hips to hurt. And all the medicines you're taking can make your body temperature fluctuate and make you feel weird." I knew this from experience. "Remember when I was on chemo and the anti-nausea medications almost made me feel worse than the the chemo itself?" He nodded but I could tell he wasn't convinced.
We spent Sunday just hanging out with Lyndsay and her family at the park and at their house. While Jimmi and Josh were outside with the kids, Lyndsay and I were able to spend some real bonding time together for the first time since our match was made. It felt like we'd been friends for years and I knew then that our relationship would continue long after she gives us our precious gift next month. I helped chop veggies while Lyndsay cooked tacos for dinner and the six of us ate together then called it an early night since we all had to be up early on Monday for work, school and a doctor's appointment.
On the drive back Jimmi started complaining about his ailments again. A new feeling of "exploding stomach" each time he'd start his infusion was added to the list, along with worsening symptoms of the existing conditions. I chalked it up to the medicine and sheer exhaustion and insisted we go back to the hotel and relax. But, the next morning, things turned from annoying to scary.
Our alarm went off at 7:00 AM, giving us 45 minutes to get up, get dressed, get coffee and get to the hospital across the street. I was brushing my teeth when I heard Jimmi, still in bed, say, "I can't stop shivering. Is it cold in here?" Since he was still under the covers and I was out of bed and warm in my tank top and shorts, I knew something wasn't right. "I feel like I have a fever and my head is pounding," he told me. "Maybe you should call the doctor," I urged. My stubborn husband dismissed my suggestion by saying, "Later. We don't have time now." He got dressed in shorts, a t-shirt and a hoodie and I shook my head and said, "No wonder you're cold. You've been wearing shorts in Minnesota all weekend!" He growled with annoyance, "I don't have a choice!" I knew to leave him alone. The shivering finally calmed down and we arrived at the hospital to check in for Lyndsay, who was still at work in the same building. She'd instructed us to call her when the doctor got into the room so she wouldn't have to take too much time off. The buzzer the receptionist had given us started vibrating a few minutes later and the nurse met us at the waiting room door with a smile. "Did you already check your weight for me?" she asked, clearly not in on the fact that I wasn't the one carrying the baby. "No, I'm not pregnant," I said and her face changed. "Lyndsay is our gestational carrier. She's working downstairs and asked us to call her when the doctor was actually in the room." The nurse seemed annoyed, "We can't do that. I can't open up the computer for him without her weight and blood pressure. Besides, it's not fair to call him into the room and then make him wait. He's leaving next week for his deployment and he has a lot of patients to see." I called Lyndsay and explained the situation. "Ok, I'll be right up," she said.
Dr. C entered the exam room after the three of us were present. We chatted quickly about Jimmi's knee and the doctor's upcoming three months in Kuwait, then he got Lyndsay up on the table. "I'm hoping Dr. H will be able to join us. She'll be going into reproductive endocrinology so she's very interested in your situation," said Dr. C of the new doctor who will be taking over the last month of our pregnancy. He had Lyndsay lie back and he measured her uterus, which seemed smaller than it should've been at 32 to 33 cm. "She's thirty-four weeks so anything within a few centimeters of thirty-four is normal," Ok, that made me feel better. A few minutes later the doctor wheeled in the portable ultrasound machine. He squirted some blue goo on Lyndsay's belly, touched the transducer onto her skin and we were face to face with our baby. We could see dark eye sockets, a squishy nose, cheeks, lips and a chin. I gushed until I realized she wasn't moving. At all. I stared harder at the screen, hoping for something, anything that would give me a sign of life. "She's much less active than last time," Dr. C said as if he could read my thoughts. He didn't seem worried but I was. "Was she moving around a lot before?" I asked Lyndsay who shook her head and shrugged. "Not really. She's been pretty quiet all morning."
Ok, dude. Move that little machine down so I can see my baby's heart beating. Hurry up. MOVE IT! But I couldn't say the words out loud because I was terrified something was wrong; that my little girl's heart had stopped.
Finally Dr. C put me out of my secret misery and scanned over Aria's little heart, which was going strong at 130 beats per minute. I was able to breathe again as he pointed out a foot and a hand before our baby moved her arm up and down and we saw her open and close her mouth. It was amazing! I was also happy so see that she no longer resembled a troll, as she had in her last photos. Whew!
little, curled fingers
Sleepy face!
"Amniotic fluid is good. She's measuring right on track." Dr. C said before turning on the sound.
Whoosh, whoosh, whoosh!
"Heart sounds good, too. Perfect!" he said. I asked, "When Lyndsay was in the hospital a few weeks ago, the ultrasound tech said the baby looked like she was going to be tall. Do you see that, too?" Dr. C looked back at the screen and took some measurements. "She does have a long femur bone so it's very possible," he said. "And she's still a girl?" I half joked. He checked the area in question and replied, "I don't see anything hanging down so I think you're safe." We finished up the appointment before the new doctor made it to the room so I asked Dr. C to give me her e-mail address so I could touch base with her. Jimmi and I walked Lyndsay to the scheduling area, where she set up her next appointment for April 21st, then we escorted her back down to work. Jimmi wasn't looking too healthy and I felt his forehead to check for a fever. He seemed cool enough so I tried not to worry. "We have thermometers here," Lyndsay said as she led us to a room at her job. She covered the thermometer with a plastic protector and stuck it into Jimmi's mouth. "Temperature is normal," she said. And then it was time to part ways for the last time before we come back for Aria's birth next month. Hugs were exchanged and she wished us a safe flight and we were off to the hotel to pack.
Jimmi was feeling awful and needed to eat before taking pain medication so we stopped in our lobby. I checked my e-mail and couldn't believe it was happening again. "Are you KIDDING me?" I yelled out loud. Jimmi looked up from his eggs. "Our flight was canceled! They automatically rebooked us on another one but it connects through Chicago and we won't be home until ten-thirty!" Jimmi was shaking his head, "No. I need to get home. No connections!" We went back to our room where I called United and asked to be booked on a non-stop Delta flight leaving at 3:20. Jimmi's chills had returned and I insisted he call the doctor's office. He was told not to worry much if he didn't have a fever, but he should go to the ER if his chest felt tight. I thought about making him go to the ER anyway since I couldn't imagine a better place for a second opinion than Mayo Clinic. But, in the back of my mind, I knew they'd admit him and I just wanted to go home.
A wheelchair met us at the airport after we checked in and we were at the gate with a half an hour to spare before boarding. We decided to grab some food at the grill right downstairs where we ate quickly and made it back upstairs exactly on time, only to hear the announcement, "The flight to Newark is delayed until five o'clock. Sorry about the inconvenience."
NOOOOOO!
Our 3:20 flight was now scheduled to leave at 5:00 and it was only 2:50. "I can't sit here that long," Jimmi said with pain in his eyes. "I need to go home!" I could see the sweat on his brow as his body shook from the chills. I felt his forehead again, which was clammy, but not hot. We just needed to get out of there.
"Good news!" called the gate agent, barely 30 minutes later. "We've been cleared for an earlier takeoff so we're gonna start boarding now!" Oh, thank God! We got settled in our bulkhead seats and waited for the rest of the passengers to be seated. As soon as they were all on and the cabin door was closed, the captain's voice came over the speaker, "Hello from the flight deck. I have some bad news."
Here we go again.
"We were cleared for wheels up at five o'clock, then they pushed us to four-thirty, so we rushed everyone on to get ready. As soon as we closed the door air traffic control informed us that we won't be able to leave until six o'clock, local time." Moans were heard around the cabin as we all realized it was only twenty after four. "Sorry about the inconvenience, folks, but there's nothing I can do. There's runway construction going on in Newark and there's only one way in and one way out. I'm going to try to push a bit but it doesn't seem like they're going to budge on that time. Unfortunately, since we've already closed the main cabin door, you won't be able to exit the aircraft at this time. Please just make yourselves comfortable and we'll be on our way as soon as we can." Sitting on a plane for ninety minutes is bad enough as it is. Now, imagine the air conditioning in your row isn't working as the bright sun pours in through all the windows. On top of that, think about the fact that we needed to give Jimmi his infusion very shortly and I was beginning to think he was now running a fever.
The captain was true to his word and after an agonizing, hot and sweaty, 90 minutes, we were finally in the air. I turned to look at Jimmi, who was shivering again. "Are you ok?" I asked. "I'm freezing now!" he said and I started to get really scared. It had to have been 80 degrees on that plane and Jimmi was wearing a hoodie with my jacket over his legs and he was still freezing. "I think we need to have the driver take us to the hospital when we land," I said and he nodded in agreement.
After what seemed like the longest flight ever, we finally landed in Newark at 9:20 PM. While taxying to the gate I asked Jimmi, "What do you want to do?" He shrugged, "I feel a little better now. At least the shivering stopped." I suggested we go home first, take his temperature and make a decision from there. I figured, if he still didn't have a fever, it would be better to wait it out until the morning, when he'd be able to see his doctor instead of sitting in the emergency room all night. He agreed. At least the boys would be spending the night at their dad's. One less thing to worry about.
The driver chatted during the entire 50 minute ride to our house and neither of us was in the mood for conversation. We finally arrived and I ran into the house and immediately grabbed the thermometer and stuck it into Jimmi's open mouth. It beeped to signal the reading, which was actually lower than normal at 97.4. "I guess we'll wait?" I asked and Jimmi nodded, a bit relieved. We unpacked our bags, got the animals situated, infused Jimmi, and finally fell asleep at around 1:30 AM.
The movement of the bed jolted me out of my slumber an hour later and it took me a minute to understand what was happening. I turned over to see Jimmi, curled up in fetal position, under the covers, shivering as if he had been thrown into a bathtub full of ice water. "Are you ok?" I asked, already knowing the answer. "I can't stop shaking," he said. "I'm freezing." I sat up and tried to clear the sleep from my head so I'd be able to think clearly. "Take your temperature," I instructed, glad I'd thought to bring the thermometer to our bedroom before we went to sleep. "Ninety-eight point nine," he said after the beep. That was a relief. As long as he didn't have a fever I was still able to remain slightly calm. I bundled him up and rubbed his back to try and relax him a bit, hoping it would help. And it did. A few minutes later his body had settled and I started drifting back to sleep. But the reprise only lasted a few minutes before the involuntary shuddering came back, full-force. "I'm calling the doctor," I announced, fully aware of the fact that it was now 2:30 AM and I wasn't sure if the infectious disease office had a 24-hour service. "Doctor's service, this is Theresa," said the voice I was so thankful to hear. "Hi, my husband is one of Dr. F's patients. He had surgery to remove a staph infection in his knee two weeks ago. He can't stop shivering and he feels like he has a fever even though he doesn't. I'm not sure if he's having a reaction to his medications or if the infection is back but something is very wrong and I need to know what we should do." Theresa took down all of Jimmi's information and told us she'd call Dr. D, the doctor on call, and if he didn't call back in the next 20 minutes, we should try calling again. I thanked her and hung up the phone to wait for it to ring. Meanwhile, Jimmi's body was making the bed shake like a scene out of The Exorcist. Fifteen minutes passed and I was getting more and more anxious and we still hadn't heard from the doctor. The shivering went from bad to scary and I instructed Jimmi to take his temperature again. "One-hundred point nine," he said with panic in his voice. I was done waiting. My instincts told me this was becoming very dangerous very quickly. "Get up. We're going to the hospital right now." Jimmi didn't didn't argue over my decision. We were out the door in and on our way five minutes later.
I hoped Jimmi couldn't see how scared I was as I drove way too fast down the empty highway. I tapped nervously on the steering wheel attempting to make it sound like I was drumming to the beat of the music. His face was bright pink and his eyes were glassy. His hair was matted down with sweat and his breathing seemed too quick. I pressed down a little harder on the gas pedal. We arrived by 3:30 AM and I dropped him at the door to get registered while I parked the car then I met him inside. The triage nurse called him in almost immediately and we explained the situation. She clipped a heart rate monitor to Jimmi's finger which showed it at 91 beats per minute. Way too fast. She popped a thermometer into his mouth and when she removed it she said, "Oh, yeah. You have a fever." I already knew that but I asked how high it was. "Thirty-nine degrees," she said. "That's one-hundred and two point two." Holy shit! His temperature had gone from 98.9 to 102.2 in an hour! The nurse handed Jimmi a mask and said, "I really think this is related to your knee, but anyone with a fever and body aches is required to wear one of these in case it's the flu." He covered his nose and mouth with the mask and we waited to go back to an exam room.
Finally it was Jimmi's turn and we followed the escort back to a small room with a curtain. She gave Jimmi a gown and asked for a urine sample then she left us alone. I knew from experience that Jimmi would have to see a nurse or two and tell his story 500 times before an actual doctor would stop by. It was going to be a very long night. I contemplated canceling Dylan's asthma doctor checkup, which was scheduled for 10:00 AM at the same hospital, since I knew I'd probably still be sitting here at that time. Then I heard some very quick footsteps coming down the hall and a doctor appeared in Jimmi's room. "I hear you're a very sick guy," said the doctor, whose good looks were hard to ignore. "Yeah, I guess," Jimmi said. "Listen, we usually have the nurses get you all set up before I come in to see you but, after looking at your recent history and your current symptoms, I needed to get in here quickly." He took a quick look at Jimmi's knee and then his PICC line. "When did you get that?" he asked about the PICC. We gave him the rundown of dates and he drew his conclusion, "I believe you have a systemic infection, probably caused by the line in your arm. Those things get infected all the time. And with your tachycardia and high fever, I think it's sepsis." That was all I needed to hear. My eyes welled up with tears as I remembered my grandfather, who had passed away from sepsis after a seemingly simple surgery sent an infection through his entire body. My voice cracked as I tried to speak to the doctor, "Should I be worried?" The doctor was very calm and spoke with authority, "You don't need to worry about anything. I'm going to give him an antibiotic that will take care of everything and he'll be just fine." I wasn't buying it. "But he's on an antibiotic. He's been on eight different antibiotics in the last three weeks!" He understood my concern. "I know. But the one I'm going to give him is top tier and I'm confident it'll take care of the problem. I also want to get that line out of his arm." Then he looked at Jimmi, "You're being admitted again. Sorry, but we need to get this under control right away." He hadn't even left the room before the nurses starting bringing in IV bags of antibiotics, fluids to rehydrate him, anti-nausea medication and Tylenol, to bring down the fever. "What should I do?" I asked helplessly. The doctor was frank with me, "Go home. It'll be awhile before we can get him upstairs and into a room. No sense in sitting in the ER all night when you really need to get some rest. I promise I'll take care of him and we'll call you if anything changes." As much as I wanted to stay with my husband, I knew the doctor was right. It was 4:30 now. If I made it home by 5:00, I would be able to sleep for three hours before picking Dylan up from school to bring him right back to the hospital for his appointment. I kissed Jimmi goodbye and walked into the cool, early morning air. When I got to the car I dialed my mom's number. Her groggy voice answered the phone and all I could say was, "Can I cry now?"
I managed to sleep for an hour and a half before the phone woke me at 6:30. "Hi, it's Dr. D returning your call." It took me a minute to figure out who I was talking to before I realized this was my return-call from the 2:30 AM emergency call to the service. Are you KIDDING me? Jimmi could've been dead by now if I'd waited on him! "Oh, yeah. He's already been admitted to the hospital. He was in really bad shape and we couldn't wait." The doctor didn't apologize or seem phased by the fact that my husband had been rushed to the hospital in the middle of the night. "Oh, ok. I have rounds there this morning. I'll go check him out." What a dick, I thought as I hung up the phone.
At 8:00 I got out of bed, got dressed, fed the animals, threw some of Jimmi's things into a bag and went to pick Dylan up at school. My mom and I planned that I would bring my son to his appointment then she would come to the hospital and get him to take him back to school. When I finally heard from Jimmi I was shocked to learn that we was still in the emergency department and not upstairs in a real room. "Did they take the PICC out?" I asked. "No," he replied. "Dr. D came in and he doesn't think that's the problem. He thinks I might have gone into medical shock from all the medications. Or I might have the flu." The flu? Oh, that wouldn't be good. He would've exposed Lyndsay and her entire family.
Shit.
"So what's the plan?" I asked. "They're giving me the new antibiotic every twelve hours, I guess, and then we just have to wait on blood cultures and the results of the flu test. It's crazy, though. I felt so much better after the first dose of antibiotics this morning. My fever broke and the pain in my knee is actually gone. It's really weird." I didn't think the new medication could work that quickly, but what do I know?
Dylan's appointment went well and my mom picked him up, as planned, so I could walk next door to see Jimmi, who, eight hours after arriving, was still in the emergency department. He was asleep when I walked in so I sat and waited in a chair by his bed. A nurse came to check on him and handed me a mask. "You need to wear this until we rule out the flu." I didn't want to wear it. I was sure he didn't have the flu. "But I've been with him all weekend. Will it really make a difference?" She was insistent, "It's our policy. When you're here, you need to wear it." I put on the mask and waited for Jimmi to wake up, which he finally did. He looked better, he sounded better and he felt better. I checked out his knee and couldn't believe the difference in its appearance from just a few hours earlier. The swelling had decreased tremendously and his lower leg looked almost normal. I was relieved that it seemed someone had finally found the right medication to treat the infection that's been running through his body for almost a month.
I wanted to stay with Jimmi until they moved him to a room but I had to get home and take a much needed shower and wait for the boys. I ran back home, showered, took care of the animals, got the boys ready to go to School of Rock, grabbed some food for them at Panera since I still hadn't been to the grocery store, and dropped them at rehearsal. When I left them I headed straight back to the hospital. It was 5:30 PM now and Jimmi was still not in a real room. I met my parents in the lobby and we ate quickly while Jimmi slept, then we headed off to get some answers. "Is it the flu?" I asked. No one knew. "Is it an infection from the PICC?" No one knew. "Is it the same infection from his knee?" No one knew. "Will he be moved to a room soon?" No one knew.
I stayed until 7:30, when I had to leave to get the boys. Jimmi was feeling much better so my nerves calmed down a lot. I was exhausted after the weekend, followed by the last 24 hours, and I just wanted to sleep. At 9:00, Jimmi texted that he was finally moved to a room and they ruled out the flu and any viruses. It's definitely an infection but they still won't know what or where until the cultures grow. I knew from last time that could take days; especially since he's on antibiotics.
I headed to the hospital early yesterday afternoon and was thrilled to see Jimmi with so much healthy color. He couldn't wait to show me that he was now capable of bending his leg all the way and his limp was gone. The swelling was almost non-existent and he wanted to go home. That's when the doctor arrived. "It looks like we're going to release you," he said. "The only problem will be getting the antibiotics for your PICC. You'll need at least another week's worth and I'm not sure if your doctor's office has them on-hand. Call them now. If they have them you can leave." Jimmi picked up the phone and called the infusion suite at the infectious disease doctor's office. Unfortunately, he was told he'd have to wait until tomorrow (today) because the medications needed to be ordered. "Ok, no problem. I'll just hang out here for another night." As bummed as I was that I couldn't take him right home with me, I forced myself to accept it.
I arrived home about an hour ago after, finally, I was allowed to pick Jimmi up from the hospital. We had to go right to the infectious disease doctor's office to pick up his new medication first. She came into the office and was thrilled to see how much his leg had improved. "What exactly happened?" Jimmi asked, hoping she could finally explain the hell he'd gone through. Her answer surprised us both. "Your body developed an allergy to penicillin. You're actually very lucky you got to the hospital when you did. But make sure you NEVER take a penicillin based antibiotic again because, even though it was a slow process leading up to your symptoms this time, next time might be quick. Too quick."
How scary!
She sent us home with a week's worth of huge IV bulbs of the new medication he's taking and we left the building, happy to be free of hospitals and doctors and nurses for a little while.
New meds
Cooler full of drugs
But I won't have too long to relax and enjoy the rest of my week. Scan day is coming up tomorrow and I'm absolutely terrified. I need to enjoy my new baby girl next month instead of worrying about a cancer recurrence. Please send good vibes or prayers or whatever you can do to help lift the hex of bad luck that's taken hold of my family recently. We could really use your help.
Thanks!
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