Saturday, February 24, 2018

Learning To Swing From The Chandelier

Confession:  through the peaks and valleys of our journey these last eleven years, I've struggled with this blog space.  It started as a cathartic experience ten years ago as I started walking down the path of recovery after our much-desired baby boy came way too soon.  I kept writing as a journal of sorts, as we soldiered on amid all the twists and turns, highs and lows, and peaks and valleys of ongoing infertility.  I tasted a miracle once with Colton, even if it was for a very short moment... so surely that would happen again. Right?  Assisted Reproductive Technology did everything that it could to try and help our process.  First, Clomid and too many pills and injections to count.  Second, Intrauterine Inseminations (IUI) - again too many too count.  Then, 1... 2... 3... long and expensive cycles of in-vitro fertilization (IVF), always followed by frozen embryo transfers (FET) because if there was one thing my body did well, it was produce a lot of beautiful eggs.

Unfortunately, they just never stuck where they were supposed to.

And when they did, my body couldn't do it's part.  Even at 24-weeks.

But then came cancer.  And it's timing was horrible as we were in the final stages of our last (and very hopeful) frozen embryo transfer.  To give us the best chance, we had (another) Hysteroscopy procedure done that Christmas to scrape away the slough from my uterus and prepare it for what we hoped would be a really good sticking ground.  I was extremely hopeful that there would be an October baby at long-last!  Unfortunately, the cells that grew back in it's place were not the things that reproductive endocrinologists handle.  Only oncologists touch that.

So another twist. Another turn. More peaks and a lot more valleys.  My feet continued stepping forward one direction, then another...  and although it killed me inside, I tried to put a smile on my face and one foot in front of the other.  I tried not to let it kill my spirit and make me lose my faith in God. After 3 1/2 years of walking that path, the oncologist finally called "Uncle" and I had a radical hysterectomy that took... everything.  And then a little more.

Almost six months post-surgery, I now find that I'm still on a path - but I've stopped and I'm turning around and around in circles.  Somewhere along the way, I apparently lost my compass so I'm looking around wondering "where am I?".  I've noticed the trees... I've noticed the sky...  I've noticed the road that goes every which direction... and I want to keep moving... but I'll be honest and say that I don't know in which direction.  I'm a little like Dorothy right now wondering which is the right way to Oz, and it's really disconcerting.

So I'm just kind of standing here.


Two months ago, I received my annual bill from our fertility clinic asking me what to do about those eight grade-A embryos that have been sitting in a freezer for the last several years.  They are stalled and waiting too.  Do I ... donate?  ... discard? ... wait for a miracle to fall from the sky by way of a very cheap surrogate?

I didn't know what to do so I cried a lot and just paid the outrageous bill for another year. When in doubt (or denial) take the easiest way out, I guess.

Two weeks ago, we completed our final home inspection for foster-care.  Will the phone ring?  And when it does, will it be for a minute?  For a week?  For a lifetime?

I don't know.

So here I stand.  But while I stand, I've decided to at least paint a pretty little picture.  I had a recent annual physical with my primary care physician who has been with me for years.  Eleven years ago she referred me to a specialist when we weren't getting pregnant.  Ten years ago, she embraced me when we transferred back from the post infant-loss.  Through the ups and downs, peaks and valleys, I have faithfully gone back to her every November for my annual physical and warm embrace.  A few months ago, I carried a piece of paper for her to fill out verifying that I'm in good health to be a foster parent.  And with that she handed me a box of tissue and said something really powerful.  I still cry just thinking about it...

"J - I want you to go home from this appointment and open the door to your sad room.  You know, that sad room in your house that has sat empty and dark for the last eleven years because it was supposed to be something else - a nursery.  I want you go in, open the curtains and finally let the sunshine in.  Paint it. Decorate it.  Hang a chandelier.  Take everything that has been quietly tucked away in your hope chest over the years and turn that space into something truly magnificent and beautiful.  Turn it into a space where dreams can finally flourish.  Create a nursery - an amazing space - where the neediest of children can feel absolutely cherished and loved.  And then wait for the phone to ring because I am confident that it will. Years ago that happened for me with a call that came in the middle of the night.  I was unprepared, but you shouldn't be.  So I'm giving you doctor's orders to un-pack the quiet corners of your heart and create something magnificent.  And when it's done - send me a picture!"

And like that... something that has been sad and painful... turned into joy and fun.

So although I am standing here, looking about and feeling a little lost at this juncture of my journey, I have a really nice chandelier hanging above me, in a space that is no longer quite so sad and dusty.

Perhaps, I'm still moving after all.

Thursday, September 14, 2017

May I Please Have An Order of Heartbreak, with a Side of PTSD?

Where do I begin? I don't even know where... or with what words.

I guess I'll start with the fact that I'm "okay". Whatever "okay" means. I'm home from the hospital and I've weaned myself off pain meds. Every day I feel a little stronger physically, although I know it's going to be a long road ahead. I actually laughed when they told me 6-weeks ... but I'll probably be lucky to regain my strength in 6-weeks. Surgery was much more painful than I expected, but I'm working on that.

Emotionally and spiritually, it's a different story.

Something happened last Wednesday that I still can't wrap my head around or explain. I was incredibly calm during the 45 minute drive to the hospital. I woke up that morning calm. I had work to do so I distracted myself at the computer with work until 15 minutes before I was supposed to leave. I rushed in the shower. I rushed packing my bag. I got in the car calm. Autopilot worked...

Until we pulled into the hospital parking lot.

Mr. Thompson had spent the night before on the couch. He was very detached watching TV all night and slept in through my relaxed morning rush. He jumped in the car when he was supposed to and we drove to the hospital in quiet silence listening to the radio. Nothing was really wrong ... yet nothing was really right. He was on autopilot too, I guess.

Until we pulled into the hospital parking lot.

We couldn't find a parking space. That's how it all started. And like dried up neglected timber, one spark was all it took. He lost it. I lost it back. And there we stood actually yelling at each other at the top of our lungs in the far corner of the hospital parking lot. Over a parking space.

Yeah, not our best moment. Not by a long shot.

I told him to leave and walked inside by myself. I diverted to the main bathroom and lost it a little in the handicapped stall. On my knees and with muffled cries in my hands, I started to break. In a bathroom. Out of control...yet strangely still in control. When I pulled it together, I wiped my eyes and walked out... down the hall to the registration area... I checked in... and started massaging my chest. Those pains from the previous post were back. So I sat there, rubbing my chest and glaring at my husband who sat on the other side of the waiting room. In my head, I said I was going to divorce him and I was 100% serious. How dare he be so insensitive! How dare he yell and act so irrational! How dare he scream and curse on my stressful day, without abandon or control! (Never mind that I was doing the same thing). 

They called my name.

I finished registration.

They handed me a restaurant-type waiting device. I text my sister and told her to call my husband in 30 minutes and offer to switch him spots, which I knew he'd gladly accept since he didn't even want to be there.

The buzzer went off. I got up and walked in the back to the clinical pre-op area. Mr. Thompson reluctantly trailed in silence.

The first nurse weighed me and took my vitals. She asked me basic questions. "Any chest pain?"... "A little, but I think it's anxiety." was my reply.  Big mistake. She looked at me weird so I amended, "I'm sure it's just anxiety. I'm really nervous. No chest issues."  I figured she didn't need to know that I had just collapsed to my knees in a bathroom stall.

They took me to a pre-op patient room to start the process. Mr Thompson stood in the hallway refusing to come in - refusing to leave. A phlebotomist came in and took blood. A newly assigned nurse introduced herself, took more vitals and asked me about the anxiety. I clarified, kept control and continued straight ahead.  I changed into a hospital gown and Mr. Thompson reluctantly decided to come in from the hallway to sit while we waited. They inserted my IV pic line and I welcomed the pain because it strangely brought a little relief. Finally, I had something to manifest externally how I was feeling internally. I welcomed the pain of the IV as it sat on a nerve in my forearm.

I sat. I cringed. I waited. I thought. I remembered.

Oh boy, did I remember! 

The nurse came back. Made them change the pic line to another spot. Asked me yet again about the anxiety... and with tears beginning to pour out my eyes, I explained that I hadn't been back to that hospital since the night I lost my son 9 years ago. How do you explain that you once had a baby in a toilet and then had to go through the very painful process of loss, which happened to occur just down the hallway? For as long as I'll live - the trauma of that experience will never go away and this exceptional hospital just served as the unfortunate trigger point. 

The second I verbalized that, Mr. Thompson reached over and grabbed my hand like a man drowning. It finally made sense. Shame on me for not even thinking about the hospital when we scheduled the procedure - I had different hospital options, I just wanted the best. But the best unexpectedly came with a price I hadn't even considered. Emotions totally out of the blue but with a depth I'll never be able to explain or understand. Especially as they manifest themselves from the moment we pulled in the parking lot, in really irrational ways. 

And that's when the crack in the dam started to became an uncontrollable break. 

The nurse sympathetically said she was sorry for our loss and then brought out the paperwork. Quiet drops continued to leak out of my eyes and my chin began to quiver as she discussed it all in very scientific terms. "A radical hysterectomy with bilateral salpingo-oophorectomy".  The removal of the uterus, cervix, fallopian tubes, ovaries, the upper portion of the vagina, some surrounding tissue and lymph nodes.

Tears poured down my face and with a shaking hand, I signed. Still maintaining control - yet totally out of control. I didn't have enough fingers and toes to keep the leaks in the dam plugged, but by golly I tried! 

I looked up at Mr. Thompson and saw a tear drop out of his pained red eyes. Red? Was he crying in the hallway? Another hole I couldn't quite plug...

Next paper. And with a matter of fact voice, she stated "this is the consent you sign, which states that you understand that from this point forward you will not be able to bear any children".

Ummm... what?! I wasn't prepared for that. I mean, I was inside... but not through a stark, cold, legal declaration. 

Woosh! Dam broke - get out of the way. 

A sob escaped. Then two. Quivering became an uncontrollable body shake. Then a barrage. Bawling, howling, shaking, take-everyone-by-surprise noises started coming out of my body, for which I had absolutely no control over from that point forward. The water burst and there was no stopping it. It took me by surprise - It took everyone by surprise, but I honestly couldn't have held the tsunami of grief back if I tried. It was the moment when a broken heart shattered into a million, tiny, little pieces.

I think Mr. Thompson said something like, "Please give us a minute. We've been at this for 11 years so it's a bit rough." All I know is that the nurse left, the door quietly closed and I cried like I have never cried in this life. Broken heart doesn't even begin to define it. I don't know what does ... but it was a physical, emotional and spiritual pain like I've never experienced before and never want to experience again. Through even the worst of it, I've never felt that.... broken. 

So I cried for all I was worth in my husband's arms, while he soothed and silently cried in mine.

Now, I realize that the insensitive screaming match in the parking lot that I thought I would never forgive him for, was just a sign that I wasn't alone and he was feeling it too. My dear husband felt the same sadness and pain. He followed the ambulance to that hospital when our world ended.  He parked in that same parking lot. He sat in the waiting room knowing his child had died and thinking his wife was going too as well. He bargained with God inside that hospital and there he was ... doing it again. I didn't know it or understand it, but now I know it's why he slept on the couch the night before, why he was so silent on the drive in, and why he totally lost it in the parking lot over a parking space. 

As I bawled and emptied my reservoir, he eventually got down at my eye level and told me I didn't have to do it. We could just walk out of the hospital and go home. No surgery. But then he also told me about his fears. His fears about cancer, that far surpassed infertility or our failure to create a family outside of the two of us.

So he said a prayer out loud for both of us, and with a trembling hand I signed that horrible paper.

After that, I laid my head back on the bed and just closed my eyes. Something died. A flame. A light. A dream. A hope. It just broke and died.

He went and got the nurse and things were very gentle after that. They wheeled me up 3 floors, we kissed goodbye and they wheeled me to the operating room. It wasn't ready so the CNA parked me in the hallway outside the doors in a little alcove.

Tears kept silently leaking out.

Someone eventually walked by me (a doctor, I think). She walked by, smiled, passed... took three steps back... and with the kindest, bluest eyes - asked me how I was and if I was getting everything I needed.  I had just been talking to my grandma in my heart and when I looked at those beautiful, kind eyes I knew my grandma - my messenger from above - probably stopped her. Sounds dumb ... but that stranger, paused, tenderly pulled the blanket up around me like my grandmother would, smiled, patted my face and then as quick as she came, she continued on her merry way whistling down the hallway. I smiled. It was a mere moment - but it was a moment of a stranger's kindness that was so big and needed. It was a rare little burst of sunshine, and I knew she was sent by an angel that I have always called my sunshine. When skies are grey.

Eventually the anesthesiologist came and with a trembling smile, I asked him to give me an extra dose and put me out good. He promised he would and I felt a peace that I was going to be okay.

I waited a little while longer.

And then my doctor strolled up. With a smile. She walked up, looked at me and said, "Hey you. I'm not going to ask how you're doing because I can see it in your face. You want me to talk you out of this, don't you?".

I said, "yes".

She reached down, wipe another tear away from my eye with the edge of the blanket and said, "yesterday during the pre-op appointment (in her office), you wanted me to talk you out of it then too, didn't you?"


She wiped another tear and told me that she purposefully didn't see me for the pre-op  appointment and made her nurse practitioner do it... because she was a coward. I smiled. The last thing this intelligent woman is, is a coward

Then she told me why. With kindness and absolute truth - she level set with me like never before. She told me we were in a deep danger zone. She told me that in a lot of years of practice, I've been the patient that she's mulled over, worried about, and tried her hardest for. She's a mom - she gets it. She's talked to Dr H - she knows how hard we've tried. She knew what was at stake. She's read medical journal after medical journal.  She's scoured the research.  She's pushed medical limits on my case - dangerous limits - for three years to look under every rock, nook and cranny,  She admitted that she's waited longer than she should have to help me with my goals. Three years longer than most oncologists ever would have. (Which was why Dr H, my reproductive endocrinologist sent me to her in the first place. If I had a chance - any chance - he knew it was with her).  She was kind, but she was very, very honest.

She ended with, "J - you can put this off longer if you want... but as a doctor, I cannot in good conscious support it.  We gave it a good college try you and I, but at this point, it's beyond what was reasonable or medically advisable."

So the dye was cast and with that, the door calmly closed.  Fear and turmoil, were somewhat replaced by peace and trust.

A pathologist was in the operating room looking at everything under a microscope and I gave permission to go as far as she needed to go. And in 3 1/2 hours, they went further than they originally thought they would have to based upon what that microscope found.

I came out our recovery like a vengeance.  At first it was peaceful.  I was leading the best disaster relief operation of my life!  I had it all under control like a superhero. Hurricane Harvey, Irma and Jose... the western wildfires... I was at work in a command center and whipping them all into shape. However, as I was directing everyone around a large map, there began an insistent voice (the nurse) who kept calling my name and interrupting my work (she was trying to get me to wake up). Oh boy was I was mad! I actually came out of anesthesia reprimanding the nurse for interrupting an important operation.  Ha! (Guess we dream what we think about, although my self confidence in that incident management situation still astounds me. Apparently, I'm very competent in my sleep! Ha. Hope I have a fraction of it in real like.)

And then I woke up... dazed, confused, and ultimately  with the stark reality of what just occurred when things started to make sense again. I started hyperventilating and lost it.  Again. The heart squeeze was back and I thought I was going to have a heart attack. Anxiety.  I've only had two anxiety attacks in my entire lifetime - one going into surgery and one coming out. Not fun, either one. Until the day I die, I'll never judge someone ever again when they say that they're having an issue with anxiety or a panic attack. I'll only have sympathy and love.

They gave me something to calm me down and retrieved Mr. Thompson in the hopes that he could calm me down.  He got a special pass into an area family members typically aren't allowed. He of course did calm me down in the way that only he can but we sat in the Recovery Room for another 3 1/2 hours while they worked on physical and emotional pain management.

From the Recovery Room they wheeled me to the 11th floor and there waiting was the best sight of my life!  My three sisters. True to my text, my little sister called Mr. Thompson and just knew something wasn't right. She was his first desperate 2am phone call 9 years ago (after 911) and she did now, what she did then - which was rally the troops. My three sisters had all been waiting for 7 hours in the waiting room and oh boy, did they start to put me back together quickly.  They took over (from a grateful Mr. Thompson) and I can honestly say, from that point forward The Three Sisters, just like those immovable mountains stood talk and strong as they mothered me, cared for me, rallied me, bound me up and bouyed me from/for the storm. Because of them - I can honestly say that I haven't looked back. 


There will come a moment in the near future when I know I'll need to redefine the journey forward, and continue the hard discovery of what I want next. That will come in time (and Xanaex) but for now, The Three Sisters have been the very best medicine for my sad heart. They stayed with me in the hospital and for a week they've been with Mr. Thompson by my side.

I've learned so much in this process, but perhaps the very biggest lesson is that when you go through the hard things in life, you need an amazing support system. Luckily, I have one and it's one I'll never take for granted.

I was discharged two days later and after arriving home, the detailed pathology report came in. Unfortunately, the cancer spread.  Consequently, I'll have to go back in for a little more surgery to take another part, which we'll discuss in my appointment in a few weeks. Prognosis is now excellent ... but thank goodness people helped me power through the heartbreak instead of allowing me to walk out of that hospital like I so desperately wanted to. 

Dr. Z was right - there was a danger I didn't understand until that moment of raw honesty outside the operating room, which I appreciate being on the other side of now. 

However, next time you can bet that I'll schedule the procedure at another hospital! Infertility's heartbreak will hopefully be a little more passable with time, but infant loss's side order of PTSD should be avoided at all costs!

Wednesday, September 6, 2017


Fear. That's what I feel.

Combined with healthy doses of sadness, grief, inadequacy, anxiety, and heartache.

And I'm not kidding on the heartache part. In case your wondering about that word, I've learned that it is very much a physical feeling. My heart literally hurts. With a pain. For two days I've been massaging my chest and it's all because of heartache.

In less than 9 hours a doctor is going to make an incision in my stomach and take out my uterus, Fallopian tubes, ovaries, and cervix. All of the parts that have been broken for so long.

The ovaries that my last fertility test said were young and healthy despite PCOS. They mass produced eggs for IVF in surreal quantities. I can't remember how many eggs were retrieved on my first IVF but I think it was 31. 28 or something like that on the 2nd. Lost count on the 3rd. Those ovaries that ached and caused pain - yet had a very important function, which they performed.

The uterus that caused a lot of problems. Fibroids during my short lived pregnancy that caused concern and alarm. This uterus that I'm both mad at - yet thankful for. With every medical marvel we tried to make it fluffy and perfect for embryo transfers... yet it just wasn't. But when the time was right it did contain the cancer so I'm thankful for that. For three years it's held on to something we didn't want to get away... yet wouldn't latch on to the one thing we wanted it to keep.

My cervix. That place that destroyed my dreams when it couldn't contain my one and only shot at motherhood. "Incompetent" is what the medical doctors called it when it wouldn't hold a baby inside. The solution was always going to be to stitch it shut if I ever got pregnant again. But I didn't...

It's a mixed bag of emotions and you'd think that I'd clamor to get rid of these broken parts as fast as I can.

Yet I'm not.

Because I'm devestated about what it all means without them.

Monday, September 4, 2017

Long-Term Recovery

This was my post on Facebook a few days ago. I work in Emergency Management for a major non-profit and my position covers the southwest and Rocky Mountain states, including Texas. Naturally there were a lot of questions and expectations in the middle of the thick of it, so I had to let the cat out of the bag...

Wednesday, August 30th

I wasn't going to say anything because I'm in a tricky little place, but I keep getting questions about Texas and Hurricane Harvey ... so here goes. 

I'm headed back home.

It was part of the deal from the beginning thanks to some very supportive (and insistent) people in my life.  People that love me, care about me and quite frankly take better care of me than I do myself. 

{Translation: I'm benched.}

I was supposed to have surgery for this stupid uterine cancer at the end of June. I delayed because I had a responsibility as the lead on this year's National Mass Care Exercise (trust me- irony not lost). New date was scheduled in June with my begrudging oncologist for September 6th.

... and despite my kicking and screaming - surgical date remains September 6th...

Smart, I know. But I don't have to like it. Matter  of fact, I don't. I'm really, really mad. Kicking and screaming mad! Or is it sad?

This damn cancer has gotten in the way. Not of a job - there is an army of really smart people doing the job (and doing it EXTREMELY well, I might add) - ... I'm mad/sad because it's gotten in the way of a dream. An important dream that's a little more delicate. It's the one that's in the quietest corner of my heart, which I've spent a lifetime thinking about. A lifetime +10.5 years of infertility treatments. 

And in those 10.5 years I haven't taken defeat easy. I've raged. I've pouted. I've mourned. I've put on boxing gloves and knocked down barriers. I've scribbled words I can't say on a silly little blog. I've prayed. I've cried (buckets). I've tried. I've failed. I've failed better. I've failed again. I've rebounded. I've hoped. I've given up. I've hoped again. I've battled. 

And when I was told to lay down my weapons of war - I laid down my weapons of war. 

How am I doing? Ask my friends who took me out to sushi a few weeks ago. I burrowed my head in my hands and bawled. 

Same reaction that I had 9 years ago when I sat over Mexican food with a girlfriend after losing a most perfect 24-week angel. 

But don't worry. I'll make it. It's a changed dream - yes, but I know Mr. T and I will eventually get there. I'll pull it together and rebound, because I'm resilient and spent 1/2 my childhood stealing my sister's dolls instead of playing with my own. But that doesn't mean that my dolls weren't cuter - because they were. {Translation: now is not the time to tell me to just adopt, get a surrogate, etc}. I'll get 6 weeks in bed to think about all the wonders that lay ahead and I'll end up on top, I promise.

So there you have it. Pre-op appointment on Thursday. Surgery next week.

As a consultation prize my boss reminded me that South Texas is a marathon - not a sprint. This will take months and years, and I'm certainly not off the hook since I excel in Long-Term Recovery.

Literally and figuratively.