We’re just volunteering to be head sheep of this weird little herd in our area, with every intention of pointing to our Shepherd.
Ten years ago, MS high school graduates had to have 2 lab sciences under their belt in order to qualify for a 4 year university. I think its more than that now. I don’t know. I’m done with that mess. I ended up with 4 anyway, because I’m a nerd. I took Biology I and II my freshman and sophmore year. I broke my chemistry teacher’s heart and my mother’s heart (who is also a chemistry teacher…Sorry Mom and Mrs. Malone) when I took one year of that mess and had a strong “EW no thanks” response my junior year, and my senior year, I went back to my happy place of AP Biology.
One of the only things I remember from Biology II (sorry Coach) was a genetics unit we did where Coach had us “dropping our genes and making babies.” Coach was so scandalous and punny. We had different gene traits on paper slips, we’d drop our genes (ba dum ching), record the answers on our punnet square, and then end up with a randomized “baby”.
I feel like that’s what we’re doing this week. I can’t drop my actual jeans, as I can’t get them past my hips these days, but we’re fixing to drop both of our genes off in a lab and in just over a week, we’ll be parents. How crazy is that? Science is so cool. Medicine is wild. And God is so, so big.
On Friday, after a green light from our doc, we started the twice daily hormone injections of Menopur and Follistim. I’m taking 3 doses a day right now, but thankfully can mix two of those in one shot, so I only get stuck once in the morning and once at night. I loath the shots, but Mister hands me a seasonal Little Debbie after every stick, and that makes me a little bit less of a grump. I’ll start a 3rd medication later this week (an estrogen suppressant, joy!), and we’re on track to have our egg retrieval on February 3.
We’ll be going back and forth to Jackson every other day for ultrasounds, blood work, and monitoring. Our first monitoring appointment was today. Doc found 14 follicles on my right ovary, and 13 on my left. One follicle houses one egg. Math is hard sometimes (which is why me and chem didn’t jive), but that’s 27 follicles. During IUI, I only ever had 2 follicles develop at one time, and I thought I was bloated then. This probably explains why I feel like a blimp. We are thrilled with that number, but also a little overwhelmed. Of course that number will drop by the time we get to mature eggs, fertilized eggs, and embryos that continue to grow until Day 5, but we don’t know how much. It could drop by 6-8, or it could drop by 15-20. Either way, we’ve got a solid number to start with.
We’re really doing this and its blowing my mind. The human body is blowing my mind. What my body is doing is incredible, and I am super impressed with it. I make sure to cheer on the belly button zip code every day, and apologize for the bruising. I’m gaining 2 lbs a day. I feel like an over inflated balloon. I am eating ALL THE THINGS, and by 7:45 I’m yawning, by 8:00 I have crashed. I couldn’t even hang with the girls Saturday night for an early dinner at our favorite spot. Sorry, y’all. But I know this (the stims) will be over in a week, and this whole cycle will have an answer by the end of February.
We are continually blessed by those who are praying for us, rallying with us, and constantly encouraging us. After my “gangsta socks” post in early December, my mailbox was overwhelmed with ridiculous socks from some of my favorite people. I think I have enough pairs to carry me through a full-term pregnancy, and each one reminds me specifically of the wonderful folks that sent them.
We are marveling at what God is doing now, and wait with great anticipation on what he has for us in February.
Hurry up and wait.
That has been our lives, it seems, since Christmas. Lots of waiting. Waiting for phone calls from doctors, waiting for paperwork, waiting for insurance, etc. We’ve still got some waiting to do, but there’s now a light at the end of the tunnel.
Excision surgery is set for April 16th in Atlanta with the Center for Endometriosis Care. A plan of procedures has been made, my employers have approved the necessary leave time, and our insurance companies didn’t laugh at us. I will be having a cystoscopy, hystroscopy, laparoscopic excision of existing endometriosis, hysterosalpingogram, and a presacral neurectomy.
Those are all great big med school words, and I had to google the last two. As big and scary as it sounds, it will be three small incisions to get in, all of the major work happening under the skin. Two of these procedures are necessary for us to start IVF, so it’s nice to go ahead and knock those suckers out on one operating table. One of these procedures (presacral neurectomy) is actually the removal of the presacral nerve, as it originates from the base of the spine, splits, and wraps around the uterus. This is admittedly the more invasive procedure. My current OBGYN in Hattiesburg once told me that my body was actively having contractions, just like labor contractions, every week, dealing with and trying to process the abnormal growths of endometriosis. He jokingly told me that labor would be a breeze for me, and then wisely moved out of arms reach, lest I go to swinging. The removal of this nerve will eliminate the pain caused by these contractions. In that same thought, a side effect is that I may not feel contractions (that actually bring about a baby) should I get pregnant. As I sit here towards the end of a really hard and painful week dealing with endo, I just can’t be mad about that. Contractions for years, with no baby? Pretty sure I’ve earned it.
April 4th, I will be running my last half marathon with rampant and unchecked endo. I’ve run the distance before. I’ve run this exact race before. This race, however, will probably be an emotional one. It will hurt, it won’t be pretty, and it sure won’t be fast. It is the most ladylike way I can think of to give endometriosis the middle finger. Will I be cured after this surgery? No. I will always live with, always fight this disease, until the day the Almighty calls me home. There is no cure. Yet. The best I can hope for is remission, until the day they find a cure. If I can run my halfs and finish my full marathon with is disease in full force, unchecked and running amuck in my body, I just might be able to fly in remission, sans pixie dust.
Another big date has been set, and an appointment has been made. We have our initial appointment to start our first cycle of IVF on June 1st in Jackson. My wonderful doctor moved clinics on me (just across town), and joined another FE. With that move came a few new nurses and staff. I was wary, because I’m very emotionally attached to my IUI nurses. I don’t just ugly cry in front of anyone, and “concentrated lady feelings” come with a lot of ugly cry. They reassured me they were still there, there’s just more of them. Since he has joined up with another doctor, their pricing structure has changed and is actually more affordable than we were initially planning. Medications will be ordered, our wine shelf will again become the “lady feelings and needles” shelf, more awesome band aids will be purchased, and the ovarian stimulation will begin on June 1st.
So far, these two things have been just a concept. Now, they are hard dates. I can count down to this, look forward to this. I know that I could wake up on April 17th and be well on my way to remission. By the end of April, there’s a good chance that I will be virtually pain free, with every organ system south of my rib cage functioning properly. If my prognosis is as good as it’s expected to be, we could be parents to itty bitty blobs in Petri dishes by June. I could ugly cry just thinking about it.
I have hurt for 15 years. I’ve gone to school, gone to work, gone to church, gone running, and lived life with this for more than half my life. Not because I’m brave. Not because I have a high pain tolerance (that’s something you develop out of necessity, in my opinion). Not because I’m “handling this well.” Because this has been my life, and it has to be handled. I can’t ignore it. I get up and deal with it, because that’s what I have to do. This isn’t the way most little girls imagine how their family would come to be, but I am already seeing God be glorified in the process.
We do have some specific things we covet your prayers for:
- Preparation for surgery: Finacially, that we would use what God has blessed us with wisely; physically, that I can maintain a healthy weight up until surgery, as I will likely lose a good bit immediately afterwards, and that all surgery prep will go smoothly; emotionally, that my pre surgery anxiety will be replaced by His peace.
- Procedurs will be uncomplicated, go as planned, and nothing extra be needed.
- Healing will happen as planned, with no complications, and I will be able to return to work and life on schedule
- Safe travels: Mister and I, along with my parents and my sister, will be in Atlanta for 5 days. It takes a village, and God gave us a good one.
We still have a long way to go, our journey is far from finished, but our God goes before us. Sometimes he is a cloud, sometimes he is a pillar of fire, but His presence is always known. We are His, and He knows our babies’ birthdays.
It’s been two weeks since we started grieving our last negative test. Two weeks I have been “hormone free.” Emotionally, we are still healing. It took less than two weeks for my endometriosis to realize nothing is holding it back any more. It’s time for the moving on.
The last week has been difficult, physically. Daily cramping and strong consistent pain is back to the point that it’s occasionally difficult to eat and it’s often difficult to sleep. I am going to work, and that’s about it. I missed homecoming at Southern Miss, I’m not very social, and I stay still a lot. I carry a heating pad in my purse. If you don’t see me plugged in somewhere, I’ve probably got one of those stick-on disposable heating packs strapped on.
We have now taken the next step towards IVF. We are having our case reviewed by the Center for Endometriosis Care in Atlanta, GA. This includes nearly 40 pages of “Potential New Patient” forms (not even “actual” new patient forms, those come later??), a 2600 word “Personal Narrative” on my physical/emotional/psychological experience with endometriosis, a picture of me and the Mister, and 150+ pages of medical records that pertain to endometriosis. Basically a manuscript, everything but the kitchen sink and a DNA swab. I’m sure that will come later. Until then, 200ish pages are currently on their way to team at the CEC.
This wonderful facility is the leading research center on endometriosis and has the largest case study on the disease (5,000 patients followed over 20 years). If anyone knows this disease, it’s these guys. We are hoping for an aggressive conservative treatment option that focuses on removing the disease from all organs and tissues, while leaving the necessary organs in place and properly plumbed. We have the support of both our doctor in Hattiesburg and our doctor in Jackson. We are hoping that if our case gets accepted, we will be able to have surgery soon.
We came to the decision that if we were going to do IVF, we wanted to do it to the best of our ability. My insides between my belly button and my kneecaps “kind of look like a war zone.” That’s a direct quote from my radiology tech. Clearly, it’s not pretty. Things don’t hang out where they’re suppose to, they don’t function like they’re suppose to. It’s just a mess, really. With IVF, we will undoubtedly be creating life. Those little blobs of cells will be my children, whether or not we see them grow that far. From the beginning, we want to give them the best that we possibly can. Isn’t that what parents are programmed to do?
I don’t want to put my little embryos up in a sketchy “pay by the hour” motel. Right now, I’m afraid that’s my current condition. I at least want to be able to give them a Marriott or a Hilton. An extended stay suite, if you will. I have come to terms with the fact that God did not make me like a Four Seasons. I am not a Duggar. We feel like having this surgery and removing as much of the disease as we possibly can will not only significantly improve my quality of life, but give our children the best possible chance at healthy growth in-utero. It’s not a guarantee. Nothing is a guarantee. We do feel like it’s the best we can offer, and we do not want to go into IVF with less than our best.
Sometimes during weeks like this last one, it’s easy to get sucked into a sad-sop trap. I have been diagnosed with a disease for which there is no cure. No one even knows what exactly causes this disease. It’s easy to let myself get overwhelmed and exhausted with this constant battle for normalcy. My daddy would never claim to be a theologian, and most of the time our conversations are weird, bordering on inappropriate (burps are rated and those stupid Sonic commercials make us giggle every single time). However, when he slips into Serious Dad, his advice is normally on point.
Pray like everything depends on God, because it does. Act like everything expends on you, because it does.
I have based much of my personal theology around this simple (and paradoxical) idea that my father has repeated to me since I was a little girl. God has called us to walk in faith. We must actively do (the walk) and we must actively trust (the faith) that He is greater. We have not been given an easy walk, and He has not given us the option to “sit” in faith. We believe that, if our case and treatment plan are accepted, this is the final step that lies between us and IVF. It will be invasive. It will involve at least three different organ systems, possibly more. We will know by the end of the month if this surgery is in our immediate future. That is a little bit scary.
We are still grieving what wasn’t, but we are also ready to see what happens next. It’s a little frustrating that we can’t flip to the end of the book and make sure everything turns out ok (you know you did that to make sure Harry beat Voldermort…).
God has been good to us. He has provided for us and sustained us. We know He will continue this work in us until its completion.
And Harry doesn’t die.
At dark thirty this morning, we headed to See DocJax up 49N a ways. No matter when we leave Hattiesburg, we will always hit gridlock traffic in Richland. Coming and going, it’s the most miserable part of our trip. It boggles my mind that it is 2014, and no one in our great state has built a way around the misery that is Richland, but I digress…
With a fresh cycle starting, we went to see DocJax to get the all clear to start our next round of treatments, which would start with Menopur shots tomorrow. Checked in and weekly lab work done, we made our way to the ultra sound room.
Immediately, once the ultra sound started, DocJax gave me a familiar, “Oh. Hmm. Well…”
That’s never good. Ever.
I looked up at the screen to try and decipher some of the nonsensical white noise (which I’m getting pretty good at thanks to the many I’ve had), and I see a familiar large black blob.
He pans over to the left and clears that side as “normal.” Normal is good. I love normal. I wish I could live in Normal. He pans back over to the right and starts to measure on his display.
Medusa the Cyst is back, at 5 cm. it is completely blocking my entire right ovary, as it is 2x bigger than the ovary.
DocJax: When will you start your next cycle?
DocJax: Well, shoot. We can’t do anything until it ruptures. It doesn’t look like it will be rupturing with this cycle, since it’s already started. We have to wait, it’s just too dangerous right now.
So we went back down 49S.
We were sent home with another ticking time bomb, to wait for it to
explode rupture, and pray that it does so (again) in a way that doesn’t require hospitalization.
We weren’t really expecting a breathing period, a pause between cycles. This is our last try at IUI before moving on to IVF and another potential surgery. Everything has been put on pause until this giant sucker decides to deflate. Again.
So we will wait.
It will not be pleasant. I will feel pretty crummy. Such is the lot in life with ovarian cysts, until someone (probably a female) figures out a better way.
Until then: ibuprofen, yoga, deep breathing, heating pad, prayer, rinse and repeat.
Surely goodness and mercy will follow me all the days of my life, and I will dwell in the house of The Lord forever. Psalms 23:6
Every time we get in the car and head to Jackson to see my FE, I get Jackson stuck in my head. Good thing I love some Johnny and June Cash.
Our first visit with my FE was at the beginning of April, 2014. My Mister now goes to every “uterus themed” doctors appointment with me. At the beginning, that made him super uncomfortable. The whole idea of “the chair” completely freaked him out. Like the champ he is, he got over it. REALLY quickly. He’s a fantastic support system, and takes his job very seriously. When seeing an FE and starting fertility treatments, both players have to be all in. All chips are on the table. It’s high stakes, and there is no room for wishy-washy.
Our first visit was just suppose to be a consultation. “Regular” chairs, everyone keeps all of their clothes on, no funny business. DocJax (FE) is wonderful, supportive, and explains our options to us. With pictures!. Mister akinned it to a Madden play illustration. Yay, football!
After our chat in regular chairs, all of our clothes, and no funny business, DocJax decides he’s ready to get started that day, if we’re in.
Chips on the table… All in.
Mister enters the room with the chair. Like a champ. Shows no sweat. I had my first fertility focused ultrasound.
Where we discovered a fist sized cyst, just hanging out on my right ovary.
I named her Medsua. She got a “Good Lord!” from DocJax, and he’s seen a lot of scary stuff.
I name a lot of things. Maybe it’s a coping mechanism? That’s for my therapist to decide at a later date.
On the other estrogen blockers I had been taking, follicles (that’s what releases the egg) had developed, but never ruptured (released an egg). When that happens, they just keep growing, and growing, and growing… Until they rupture.
I’ve had cysts rupture before. It sucks. It’s excruciatingly painful, usually involves significant blood loss, and no ER will do anything for you unless you can prove to them that you are hemorrhaging to the point of losing vital functioning. They’ll pat you on the head, give you some pain medicine (maybe), monitor your vitals for a bit, and wish you luck in the horrible lot of life that is “ovarian cysts.”
This cyst was bigger than anything I’d ever had. We needed it to rupture, but we needed me NOT to end up in the hospital. We gave it a week, with a surgery to drain it as the ultimatum. Within a week, I woke up with excruciating pain in the middle of the night. I knew what it was. Enter learned pain management techniques of alternating pain relievers, yoga, heat, deep breathing, and pleading with the Good Lord for mercy and relief.
Fertility treatment is expensive, and you’re lucky if your insurance covers even the doctor visits. You can forget coverage of medication and actual procedures, especially in the forward-thinking State of Mississippi. I say all that to say, I went to work. The Bushes have bills! I grabbed a giant protein packed smoothie and started to replace fluid volume. I continued my pain management regimen. Thankfully, I got to sit at my office (where I am the only one there) most of the day. I was quite dizzy and in a good bit of pain, but I got through it.
God will always give you exactly what you need, when you need it. That is a recurring theme in our story.
We saw DocJax the next morning. Our ultrasound showed the Medusa had indeed deflated. And I did it with out the hospital, or missing work. That earned me a DocJax high five. We had our medication shipped overnight from a special Fertility Pharmacy in New Jersey.
DocJax accurately assessed that estrogen-blockers didn’t work for me, so he went straight for the big guns. He started me on 75 mg of Menopur (highly purified and concentrated LH and FSH), injected subcutaneously (in the skin, similar to how insulin is injected) daily, for several days. I was monitored every other day, to make sure Medusa did not return, and to make sure my ovaries didn’t all of the sudden have an identity crisis and think they belong to OctoMom.
Being monitored every other day means driving to and from Jackson. Every.other.day. As stated before, the Bushes have bills! If we’re going to pay for these treatments, we’ve got to work. So all of our Jackson appointments are
bright dark and early in the morning. It makes for rather long days and frequent oil changes.
After 8 days of
liquid fire ant Menopur injected into my belly by the greatest sorority sister/friend/roommate/neighbor a girl could ask for, I had two follicles ready. Sister Nurse gave me my trigger shot (10,000 units of HCG) right in muh buttocks (thanks, Forrest Gump). I was pleasantly surprised when that one didn’t hurt, initially. Twenty minutes later, I thought I’d been shot with a bullet rather than an IM needle. I sat funny for 3 days.
We had our first IUI procedure 12 days after Medusa bade us farewell, and I started heavy progesterone supplements immediately afterwards.
One week later, I had my progesterone checked, per doctors orders. My numbers topped the chart. Actually, the chart didn’t go high enough to support my numbers. I’d ovulated, and DocJax and his wonderful nurses were thrilled and incredibly hopeful. It was the first time Mister and I had ever received any good news regarding Ursula (the uterus… I name things). I almost didn’t know how to respond to good news!
A week after that, I went for the test.. The HCG and progesterone test. This would tell us if we were finally pregnant. I cannot pee on a stick, due to the outrageous amounts of hormones I am on, and expect an accurate answer. The blood test came back negative.
We were devastated. We had hoped for the first time in so very long, and we were crushed. I cried a good bit, got a box of Cheez-Its, and had a slob night. I read about Hannah and Rachel and Elizabeth and Sarah and the great women of scripture that struggled with being “barren.” I read how God sustained them, how He blessed them, how He kept his promises to them, even if it wasn’t how they’d planned.
Five days after our first negative, we started our second round. More shots. More visits to Sister Nurse. More monitoring. More bruises. Same song, new verse. The good news was my body responded even more quickly to the meds than it did the first time, with two more fresh follicles. Our second IUI procedure was three weeks after our first. My progesterone came back with fantastic numbers. All of this is very encouraging.
We still were not pregnant.
Because of the drugs, my usual month-long cycle speed was amped up to 3 weeks. In six weeks, we had done two fertility treatments. We needed a break, physically, emotionally, and financially. Did I mention we had to buy a washer and a dryer in the middle of all this? And that we were paying cash for the treatments?
God will give you exactly what you need, when you need it.
We took a much needed two month break. We worked, we prayed. We sought wisdom from friends and family. I didn’t count days or record temperatures or over analyze every pain and discomfort and feeling. I ran more. We did a LOT of weddings (Mister is the greatest photog). We gave Sister Nurse a break from seeing us before her nightshift every day. She loves me. I’m the best patient, really. And she doesn’t judge me when unladylike words jump from my mouth because those shots burn like crazy.
We took a collective deep breath, and geared up to start again…