Tag: hope

Remission

“Good morning, Mrs. Bush.  You are endometriosis free.”

I don’t normally appreciate any greeting, in person or electronic, before 8:00am.  Particularly any that refer to me as formally as “Mrs. Bush”.  I also don’t normally hug and cry in front of grown men I’ve known for less than 36 hours.  Friday, April 17th was a weird day.

It’s been ten years since I was last in Atlanta.  Ten years ago, I was doing one of my first and biggest “grown up” things by hopping on a plane with my best friends and spending the next 3 weeks visiting friends in Germany.  While at the airport in Atlanta, I got super nervous, started pouring sweat, and then emptied my stomach into three (yes.  Three) “turbulence discomfort” bags, all before taking off.  I’ve done a lot of growing up since then, but my somatic anxiety tells haven’t changed one bit.

Last Wednesday, after meeting my parents at Big Bad Breakfast in Birmingham (excellent recommendation, Brittany!) for my last real-food meal (for a whole week), we hopped in Favre (my sweet new Southern Miss gold Jeep) and headed to Atlanta for my pre op appointment with the Center for Endometriosis Care.

I was given the opportunity to enroll in two separate studies regarding endometriosis, with one aiming to genetically link endometriosis and infertility.  All of the “awareness” noise we make is meaningless without action behind it.  I’m very excited to be a part of the action.  

After a conference with my wonderful doctor (he likes to meet you formally before he meets you on his exam table), I had a rather painful exam.  Doc diagnosed me with pelvic floor dysfunction.  I’m still learning what that is and what that means, but here’s the short (and Internet appropriate) version:  my pelvic muscles have been spasming like crazy for a long, long time.  When a part of your body feels pain, it contracts.  This part of my body has been feeling a lot of pain, for a long time.  It keeps contracting, over and over.  Now, it has a hard time knowing when that’s appropriate.  This is one of the main causes of my daily pain with things that shouldn’t be painful.  Next month, I will start a very specific form of physical therapy to help reprogram my muscles.  More on that at another time.

I was sent to our hotel with a lovely gift bag.  Inside was a humongous bottle of Miralax, some Dulcolax, lots of Gatorade, and a Fleet Enima.   This goes to show that with proper southern hospitality and etiquette, a colon cleanse can look like a spa gift basket.  Sounds like a party, right?  It wasn’t that bad.  Not something I’d actively choose to do on a Wednesday night, but I know it could have been a lot worse.  

As mentioned above, my anxiety lives in my tummy.  Occasionally, it pops up to make itself known to everyone else.  My anxiety heaves made their appearance once I was in the pre op area, putting on the awful gown and getting my IV Thursday morning.  More props to my nurse for being Johnny on the spot with the bag and ear sticker. Considering I had just emptied the contents of my entire digestive system a few hours earlier, there wasn’t much to put in said bag.  They started giving me ALL of the anti-nausea and anti anxiety drugs, which was super.  Shortly after, my doc came in, cracked a few jokes, and then did the most wonderful thing.   He took my hand and put a hand on Mister’s shoulder, and he prayed over us before surgery.  After a kiss from mama and daddy, they gave me the real good stuff, and I woke up a few hours later with searing pain in my right side.  This was odd to me, even very drugged, as 99% of my pain has always been on the left.

I have very vague memories of the remainder of Thursday.  I know I had a pain medicine pump with a button.  I know that button didn’t work for the first few hours, and Nurse Melinda was very impressed with my pain tolerance.  I know I made mama text Student Doctor Bestie and ask her why I could taste everything they put in my IV.  I know I hated those leg compression things, almost as much as I hated the hospital gown.  That thing went as soon as I had the faculties to sit mostly upright with some assistance, and on went my leopard print gown with matching robe.  Leopard is a neutral and is flattering on everyone.

I was informed later Thursday and again on Friday morning what all happened on the operating table.  I had a cystoscopy and a hysteroscopy (a look around inside my bladder and uterus, respectively), and those areas were clear and free of endometriosis, fibroids, or polyps.  I had three small incisions:  belly button and one near each hip, where my doc excisised all the endometriosis he found.  I had a presacral neurectomy, and a surprise appendectomy.  Turns out, my appendix had endo on it, and was “glued down” to my intestines.   Doc didn’t like how it looked, he was in the neighborhood, so PEW PEW!  There it went.  I’m sure God gave us those things for a reason, but I can’t say I miss mine.  This explains the pain on my right side when I woke up.

The presacral neurectomy has been the biggest adjustment for me, so far, and was my biggest obstacle in the hospital.  Nerves are important, and the ones down there are in charge of a lot of stuff.  It took me a solid 24 hours before I regained the noggin to muscle control that one needs to go to the bathroom.  It took some serious focus and a catheter at 3:00 am before my body figured out how to empty my bladder all by itself.  I got a high five from Nurse Melinda once I did figure it out, though.  Friday morning, my doc came in and gave me the only news worth waking up at 7:15 with a catheter taped to your leg to hear.  I am endo free.  He got it all.  The chance of recurrence (regrowth) is less than 5%.  My endometriosis is in remission.  The good news didn’t stop there.  Doc had originally told us that we could start IVF a month after surgery, so we scheduled our first cycle to start in June.  However, he has encouraged us to wait 3-4 months.  Not because of healing time or because I wouldn’t be able to handle the treatments, but because he thinks he has fixed our problems.  He has encouraged us to give the good old fashion way of conceiving a few months, because he believes it to be possible now.  He hugged me again, blessed us both, I cried, and then Mister took me home to nap where nurses wouldn’t bug me or poke me.  Saturday we went to Steak and Shake where I had a cookie dough milk shake, and on Sunday, Favre brought us home.

I went back to work yesterday.  I’ve gotten a lot of surprise about returning so soon, but I promise, doc said I could sit at my desk and do stuff.  It helps that I love my job.  It helps that my property is small, and I can plan my day around specific needs (like being still).  It also helps that I have a rock solid work family.  I work in a relatively new company that makes a point of rallying around each other and supporting their managers and properties in any capacity.  I knew this on the professional level already, but they have gone above and beyond anything I expected with this surgery and potential IVF.  I have personally heard from my direct supervisor, my counter parts at other properties, the president of my company, and a few of the owners, multiple times over the last week.  Each time they have made it a point to be encouraging, supportive, and to make this time as easy as possible.  They didn’t judge me when all the feelings came out and I cried after a simple “safe travels”, either.  

I am still sore and moving a little slow.  I probably will be for another week or so.  I come home from work and immediately sit down, with the intentions of doing nothing for the rest of the day.  So far, that’s working out great.  We have wonderful friends bringing us meals while I continue to heal and figure out what “normal” is.  I have hurt every day for so long, I have no idea what endo-free life is going to look like in practice, but I’m pretty excited to find out.

While this month has been immensely stressful, it has been full of encouragement and hope.  There are a few uncertains still, and I have a feeling that pelvic floor therapy is going to be another adventure.  We are healing.  We are encouraged.  We are hopeful.  We are well fed.  And we are His.  To God be the glory, great things He has done.

Case Review

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.

Round 4

After a couple of weeks of waiting, we’ve finally been able to start our 4th and final round of IUI. My cyst ruptured without causing too many problems (besides several days of fever and general feelings of icky-ness). Medusa is no longer “a problem we need to be concerned with”, and my hormones have jumped back into gear.

After the general tests and exam last week, DocJax cleared me to start round 4. We’ve gotten our meds and Mister has been giving me my injections every night this week. This round, the hormone migraines have been particularly difficult to reign in, but I seem to be getting a handle on them finally. We go for a progress check (and more blood work, of course) on Tuesday, with a procedure likely on Thursday. After that we will enter the two week waiting period for the last time in 2014. As we bought alcohol swabs and band aides at the pharmacy (yay, shots!), Mister grabbed a pack of blister-healing band aides.

Go ahead and grab these since they’re on sale. If we get another negative, I know you’re going to need to run it out, and it’s going to jack your feet up when you do.

That right there, folks, is true love. He gets me. My blisters/calluses also gross him out.

This weekend was suppose to be our first weekend with no minimal traveling, and we were looking forward to fellowshipping with other believers today. Other than Mister covering the game at Mississippi State and my responsibilities at a downtown event, our weekend was more or less “free”. Then significant car trouble (quite possibly in a location one might meet the Devil for dealings) at a very late hour and a tow truck that was in absolutely NO rush at all (Hail State, y’all) changed our down weekend into an impromptu road trip two hours north in the wee hours of the morning for a rescue mission. We finally all got home and in bed at 6:00am this morning. Shout out to my baby brother for riding with me and keeping me company, even though he had to work all day today. I am far to old to be pulling all nighters anymore, and I’ve now got an appointment with my eye doctor. Night driving is a lot more difficult than I remember. We didn’t make it to church a few hours later. The sleep was greatly needed, but we really miss the rest of our local body of believers.

This week brings more Jackson, more needles and tests, more salmon (omega 3s, y’all), and more football. It also brings a quick weekend trip to Memphis to see the first baby I have prayed for since half of her DNA was contained in a mature follicle. I’m told her parents will be in Memphis too, and we’re pretty excited about that.

We have decided a few things in the last few weeks of dealing with the cyst. As mentioned before, this will be our final round of IUI. We are still hoping that this 10-15% chance will be our yes, and this will be our last round for wonderful happy reasons. However, we are planning for other outcomes. If this round does not work, we will be moving on to IVF in the spring. After speaking with our doctors in Hattiesburg and Jackson, we have decided that our funds are better spent procedures with better odds and more doctor-control. We will spend the rest of the winter saving and praying and preparing. We are also gathering all of my records and sending them to a group of surgeons in Atlanta that specialize in the removal of endometriosis, and we are having out case reviewed. The Center of Endometriosis Care does amazing work removing endometriosis from all areas of the body (more on my particular case in a different post) and we are looking forward to hearing ALL of our options.

We will be taking a (much needed) vacation in December. A vacation from work, and a vacation from infertility. This season of our life has been overwhelming and over scheduled (I’m looking at you, football…), and we are in serious need of a recharge.

We are a little terrified. We don’t really feel like we know what we’re doing. We are seeking God and we are following where we feel He leads. Both IVF and surgery come with some pretty scary “what ifs” and procedures. Both are much more invasive, time consuming, and energy consuming. We know that before this month ends, we will be looking towards more invasive medical procedures, whether that be pregnancy (!!!!) or IVF/surgery. You are probably starting to grasp why we need a vacation.

I have the best friends, the greatest family, and the most supportive spouse to face this with, and that makes things a little less scary.

Rinse and Repeat

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.

Medusa.

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?
Yesterday.
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

Look out, Jackson town

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.
huh.
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…