May 31, 2012 – The Journey So Far

The last six days were heavenly.  Doc had those days off and we spent every moment of it together.  It was the first time in 3 months that we had time to do that, when it wasn’t an emergency.  I cannot stress how important this time together is.  It was time to reflect on everything that has happened.  We had time to process the journey together, which is what we have always done and it is why we are sliding into 11 years of happily married.  Medicine, in general, doesn’t seem to encourage happy and healthy marriages.  We are going to change that.  It is our family and then everything else.  Not a job and everything else. 

We spent some of our time reflecting on our situation.  We weren’t able to deal with all of the emotional stuff when it was fresh, it was just too hard to face.  On the day that we found out about the miscarriage Doc couldn’t go home.  For hours he drove around.  I went with him because I couldn’t bear to not be with him.  We ended up crying at the mall, crying in the car, crying in a booth at Jason’s Deli because we couldn’t face our home, where we had begun building a family and planning a future with children.  When we finally did return home we had things to put away.  Decorations for the nursery, baby’s first onsey, diapers and wipes… things you need only if you have children.  We shut the door to the nursery and walked away from the pain.  It wasn’t until we had time alone together that we could face it again. 

That probably sounds like a horrible way to spend a vacation, but really it was glorious.  Facing it allowed us to make plans for the future again, to put the last 3 months in our past instead of allowing it to be constantly in the present.  We made new goals for ourselves and our family.  We talked about our feelings, apologized for bad behavior (no one likes living with a grump) and came together again.  That makes it sound as if we had been living a horrible life recently.  It wasn’t that we were super grumpy with each other; it is just that we were not ourselves.  Doc and I are affectionate and talkative.  We never lack for things to say to each other and we never have more fun than when we are together.  For the last three months we have been stuck in our individual pain, so it made it hard for us to be ourselves.  We spent time being polite and just going through the motions of what we knew we had to do.  It wasn’t connecting and healing, it was survival.  Now, because of this time we had together we are back and it feels good.  I can finally talk about it all without crying, Doc can talk about it (he tends to not speak when upset), and we are starting to talk about it as a part of our history which allows us to hope for our future.  J 

We still have doctor’s appointments, blood draws, and all of the other hoops to jump through.  We are just back to doing it together. 

May 24, 2012 – Counting Chickens

They say, “don’t count your chickens before they hatch.”  I guess I should say don’t count your HCG before the lab.  My doctor called with my HCG levels last night and it is still 4.  He stated that because of my history of crazy side effects he isn’t willing to let it go.  I have to go back in 2 weeks for another HCG check. 

I am trying not to worry about it too much.  My HCG hasn’t gone up and is very low, so chances are things will work out just fine… having said that I now feel like I have cursed myself.  Maybe I should go running through the streets screaming “I have cancer” and then I would really end up being healthy and fine. 

May 23, 2012 – Normalcy

For the first time in 2 months I forgot to get up and go to the lab for my HCG draw.  It was nearly one before I realized I had forgotten.  I am taking this as a wonderful sign; because for the first time in 2 months this pregnancy and loss weren’t the first things on my mind when I woke.  Instead I ate breakfast, checked facebook, responded to texts and emails, and paid bills.  My old routine.  Things are finally beginning to settle. 

Last week my HCG was a 4, which is technically negative for pregnancy.  The nurse said a period should be forthcoming and then I should be 0 by today.  Friday I had my first period since January.  For my entire life I have thought, “wouldn’t it be nice to not have to worry about periods.”  It turns out the answer is “no”.  Periods are a sign of health.  It is amazing how this change in my thoughts affected my perception of the event.   

 As my hormones have settled, I feel like I am returning to my previous self.  It is very good to be back.  Doc is still struggling with everything that has happened.  I think this is mostly because his work requires him to be focused on others and it leaves no time for him to think about his own situation.  He has had 3 intense rotations while also facing 3 months of very difficult challenges in his personal life.  He has a lot to process and hasn’t had much time to deal with it.  This manifests itself in a bad mood.  I can’t blame him.  We desperately need some “us” time to deal with everything that has happened and to reset our course.  Thankfully he has 6 days off starting tomorrow.  We will be unplugging (as much as we can while he still has to study for boards) and reconnecting as a couple.  Forgive us if we disappear or seem unavailable during this time, we love you all, but we have to put our family first.  It is time for us to finish processing everything that has happened so we can put away these emotions and move on.  So that when we start trying in August we can enjoy the experience.  J

May 10, 2012 – Waiting

I assumed that since we were not currently able to try and conceive a baby that the big waiting game would be over… As usual, I am a moron.  The nurse called with my HCG levels.  Today we are at 7, a whole 2 points less than last week.  She explained that they are hoping it will drop off after I have a period.  So, I am waiting for my first period.  It turns out that my doctor was wrong about it coming this week.  Thus confirming that he is not psychic, which would be really handy for an OB if you think about it.  Regardless I will be going in for my 10^th HCG draw on Wednesday. 

I did just find out that the insurance is doing a really good job of covering all the lab work.  Thank God we have insurance!   Although insurance doesn’t cover anything related to fertility treatment (labs, meds, visits) it has covered everything associated with this pregnancy.  As the bills roll in and we are nearing the end of our 1^st year of trying I am going to add up all the pre-insurance costs of this year and see how much it would have cost insurance free.  I wonder if we will spend as much money on health care as we spent on medical school.  I am certainly off to a good start!

May 04, 2012 – Deep breaths, one foot in front of the other

On Tuesday evening I had a mucous discharge.  Super gross, right?  I thought so.  As promised, I called my doctor’s office about it.  They called me back and said the doctor wanted to see me.  The big concern was, of course, infection.  I knew I didn’t have an infection; no fever, no chills, no odor. We have only had protected sex, so no new pregnancy to worry about either.  My doctor is being cautious and I appreciate that. 

When I arrived the office was full of very young, very pregnant ladies.  Many of whom had several children in tow.   It was depressing.  Don’t get me wrong, I am very happy for everyone who is able to have children, but following my recent nightmare it is hard to be around things that remind me so much of what we lost.  Thankfully the nurse saw me, checked me in, and got me out of the waiting room quickly.  She also gave me my current lab results; my HCG is now at 9.  It is still dropping, which is good, but I was really hoping for 0.  We can’t be done with this nightmare until it is 0 for 3 months.  Until then I get to spend every day worried that I have a new nightmare waiting just around the corner. 

My doctor checked me, everything looks good.  I am tender, but that is to be expected.  He actually thinks I should be having a period in the next week.  I haven’t had a period since January, so I am actually looking forward to it.  It will be a sign of normalcy returning.  I am supposed to call and let them know when I finally get a period.  I think my doctor will be happy to see signs of normalcy returning as well.  This has been hard for all of us. 

Obviously, I am still dealing with the emotional upheaval of the last few months.  My hormones don’t help that situation.  Another factor which is making life more difficult is the impending arrival of Mother’s day.  The mere mention of which has me in tears.  Again, I am not unhappy for all of the amazing moms I know, and I know a lot of really great moms.  It is just that I feel so empty when I see a commercial or ad for Mother’s day.  It just reminds me that I lost our baby.  It reminds me that as of April I have been on prenatal vitamins for a year in preparation for pregnancy.  July marks a solid year of trying and failing to start a family.  It is all just so hard to handle.  I know my hormones are helping to exaggerate my feelings, but it is still hard. 

It is also hard to know what to say when people ask how we are doing.  As a therapist I know that a lot of mental health issues could be avoided if people just talked about real stuff that was going on with them.  However, in practice I have noticed that talking about our situation silences a room in a hurry.  People don’t know what to say in response to our reality.  Having to smile and say everything is just fine just makes me feel lonelier.  I would rather people not ask if they don’t want to know.  People want to know it is over, which is understandable.  However, the problem is that it isn’t over.  The reality is that it won’t be over for at least 3 months, possibly much longer.  The problem is that even when we do get pregnant again it won’t be the same.  How am I supposed to get excited about it again after everything we have been through? 

April 26, 2012 - Clearing The Air

Today I had my post-op follow up appointment with my OB.  I had been feeling a little tense about it because it would be the first time we had a chance to speak since the big emergency surgery.  The one thing I knew I wanted to say was “thank you!”  I decided to bake some cookies for my doctor, his nurse, and my internist.  I wrote each person a thank you note to go with the cookies that expressed how thankful I was to have them all in my life. 

The nurse was so excited to be included.  Nurses do so much and are so rarely thanked, so if you have a nurse that does something kind for you, please say thank you.  If you are too ill to do it right at that moment, do it when you feel better.  It will always be appreciated.  The nurse also told me how impressed she was with my husband.  She said that they see a lot of husbands, but mine was so compassionate and intuitive.  I had to smile and did explain that he is also a doctor, so he had a good idea of what was going on.  She laughed and said that explained some of it.  Doc is a heartbreaker; thank God he doesn’t know it! 

It’s a strange thing to be on both sides of the coin, to be the patient and to also know what the doctors go through.  I know literally dozens of doctors, and not one of them goes to work hoping to see a patient bleeding out on their table.  Not a one.  Nearly every doctor I know says a little prayer each day that they will be wise in their decisions and be able to help improve the lives of their patients.  Complications happen.  Bad things happen and bodies don’t all react in the same way.  Doctors have to face the horror of what happens when things go wrong.  It is their own personal nightmare and then it is followed by the fear of being sued or hated as someone who ruined another person’s life.  It is very stressful to be the doctor.  To be the patient is terrifying and stressful in its own way, but at least when you are the patient you have the sympathy of friends and family.  Your pain is obvious and visible.  The doctor just gets to see the next patient and hope for better outcomes.  It is hard to be the doctor.  They are just people after all, although that can be easy to forget.  Even I forget that my doctors are just people, and I am married to a doctor!  I have no trouble remembering my husband is just a person, I’ve known him since he was 20, turning 21 together will forever remind me that he is just a person.  But somehow the expectations for physicians seem to be higher than it is for other people.  They shouldn’t be so human.  Well, that is just silly!  They are human, they have families, lives, and they laugh at fart jokes just like the rest of us.  They are doing a job and it is harder than most jobs and it has far greater consequences than most jobs and they love their jobs, but they also have fear in their lives that most of us live without.  Most of us (including me now that I am no longer working) don’t have to worry about being sued or making a decision that costs someone their life.  We never have to think about things like that. 

So I decided that today I would let my doctor know how much I appreciate the work he has done for us and that I understand it has been scary for him as well.  This decision led to one of the loveliest talks I have had with my physician.  I let him know that I understood how unforeseen all of my complications were and how they must have been just as scary for him as they were for us.  I admitted my part in creating an emergency.  Yep, I had a part.  I don’t express pain in the same way that 99% of the population does.  It is hard for them to know I am in pain and scared because I am very calm when explaining things.  By the time I look upset it has become an emergency.  This makes their job harder.  I let him know how I planned to fix this; from now on I will call either he or my internist with changes.  They are very good at talking to each other, so I don’t have to worry that important information is getting lost. 

My doctor told me it was scary for him.  It is common for people in healthcare to have everything under the sun go wrong.  He said that because I am who I am and my husband is who he is, we are bound to have trouble and they will be ready for it now.  He told me that he hopes we won’t give up on having children.  This meant a lot to me.  I told him when I am pregnant again I will be a crazy person and in his office every week.  He told me he would be very happy with that.  

This conversation may not seem like a lot, but it meant so much to me.  It meant that we could have conversations like this and that he was listening to what I had to say.  It means we can continue to work as a team and that we will work well as a team.  This is important to me.  Getting pregnant is a struggle for us, but we don’t want to give up, and we need our doctor to be on our team.  We can’t have fear be a part of our team, so we needed to talk about everything. 

After we worked these things out we got back to the business of today’s visit.  My post-op check up.  Things look good!  The bleeding is irregular, but he said that may be the case for the next 2 months while my hormones adjust.  I told him I am super cranky, and he said that was a good thing because it means my hormones are getting back on track.  My pathology results came back and were unremarkable, which means they found only products of conception… NO CANCER!!!   We can start having sex again, but we have to use protection for the next 3 months.  My HCG is down to 15 and as soon as it hits zero I will be able to go to monthly draws.  Until then I am still getting weekly blood draws.  It was a lot of good news. 

As my doctor left he took my hand and I saw him loose his words.  He gave me a look of supreme relief and gratitude.  I think clearing the air meant as much to him as it did me.  No one wants to live with tension or worry.  I know my doctor is doing his very best work for me, and it is important that he know I understand that.  It is important that he still feels confident in his decisions and choices.  A doctor that is scared can’t do their best work.  They can’t be bold or innovative if they are afraid to make any new moves.  I don’t want that.  I want a doctor that knows my end goal and is on board with getting there by any means necessary.  I want a doctor I can trust, which I have.  We have had horrible side effects and complications; those were not my doctor’s fault.  They just happen.  There isn’t anyone to get mad at or blame.

April 22, 2012 – The Beat Goes On

Last week I had finally started to recover from the emergency surgery on my birthday.  The bleeding had dwindled down to spotting and that alone was making me feel better.  I hadn’t had a single contraction since the surgery.  I was still feeling exhausted and drained, but I was so happy with the not being dead part of life that I was willing to ignore it. 

I saw my internist on Tuesday.  She is amazing and offered an iron transfusion to help me get back on track.  I decided to wait, because I wasn’t feeling that badly.  Wednesday I was slammed with a pounding headache every time I tried to move.  I felt nauseous and dizzy all the time and had to keep closing my eyes to try and steady myself.  Doc said I needed to return to the doctor.  We made a deal after the birthday drama; I would keep my doctors in the loop with any and all changes and allow them to make the decisions about what was important and what could be ignored.  That way when something major changes it wasn’t such a shock.  I also think that we could have avoided the emergency surgery if I had gotten my internist involved the first time I went to the ER.  Apparently because I was polite and cleaning myself up they didn’t realize I was serious about the pain and bleeding.  Had I called my regular doctor she could have helped advocate for me or could have seen me the next morning and she would have helped me.  That was my mistake and I don’t plan to make it again. 

I called my doctor and got in to see her on Thursday.  She agreed with Doc that I was looking pale and not well.  They took some blood, she ran a few tests, and she came to the conclusion that I was going to need some blood.  My blood pressure was so low that I would nearly pass out when changing position from sitting to standing or laying to sitting.  I had noticed when I tried to pet my dog that morning I got really dizzy when I stood up.  I had been making myself move slowly to compensate.  My poor heart had been working overtime to try and keep my body oxygenated.  Between my asthma and my propensity for low iron my body has a hard time remaining oxygenated on a regular basis.  Add a month of blood loss on top of it and we were looking at a very over taxed body.  I agreed to head to the fusion center and get 2 units of blood.  Not something I ever thought I would do.  Doc was on overnights last week, so he was asleep for all of the fun.

It turns out you can’t just walk in and get blood, it takes a while to get the blood ready, so I spent all day at the fusion center.  Thankfully, some of the residents were nice enough to spend their lunch break with me.  It pays to bake them cookies and treats! 

Fusion nurses are the best at finding places to stick people.  They stick giant needles into people all day long.  My fusion nurse told me my veins were looking pretty shot.  She finally opted to stick me right above my IV stick on my right forearm.  It was not a pretty stick.  The vein kept collapsing on her and she had to hold it just right to get the blood to flow out (for typing and cross matching).  It actually made a hissing nose; she said she had never heard that before.  Awesome.  My veins are trashed and the IV hurt all day long.   



Apparently getting blood
 does not make you
sparkle in the sun. 

It wasn’t until around 2:30 that my blood was actually ready to be pumped into me.  I wouldn’t recommend it, it hurts… a lot.  It basically felt like my whole arm was swollen and achy.  It throbbed with the machine and if I moved my arm at all it would block the IV and the machine would shut off, so I had to sit perfectly still for 3 hours while my arm hurt.  It did make me feel a lot better though.  That was kind of amazing.  I am pretty sure my doctor is a genius.  

Bleeding in reverse.

It was while I was sitting there, watching myself bleed in reverse, that I started to think about everything that had happened.  Watching this machine pump blood back into my body I started to realize that I really could have died.  Who almost dies because they got pregnant?!?!  Why is this happening?  And the dreaded, totally illogical question; what did I do to deserve this? 

I know I am not being punished.  That being said, it is hard to not feel like I am being punished.  I got pregnant.  Then I had a miscarriage, 2 D&Cs, a painful and embarrassing trip to the ER, several painful pelvic exams, I nearly bleed to death while crying on my doctor’s exam table on my birthday, and to top it all off I had to have blood pumped back into my body.  That kind of feels like punishment.  That kind of feels like the universe just bitch slapped me and said, “NO!  Bad girl!  Don’t do that!” 

I am sure it doesn’t help that my hormones are still out of whack.  My HCG was 37 on Thursday, so I am hoping it will be 0 when I see my OB on Wednesday.  I hope that will be the last blood draw for a while.  I know I will have to keep getting stuck and continue to have my HCG checked for a while, but hopefully it won’t be every week.  Lately it seems I don’t go 5 days without a blood draw or IV.  In grad-school we had a professor who told us that exposure was the answer to curing all fears.  We were told even exposure to needles would reduce a person’s fear.  I am going to go ahead and tell you she was wrong.  Exposure to painful stimuli does not reduce the fear associated with the stimuli; it is more likely to create the experimental neuroses documented by Pavlov.  I know I am certainly feeling more neurotic, but I am trying to deal with it.  I am trying to let my body heal and let my brain process everything that has happened.  I acknowledge that I am feeling very emotional and worn out.  My body feels old, much older than ever before and I wonder if it will ever feel better again.  I feel beaten down and hurt.  I am not sure how this will all work out, and for right now I am stuck with the repeating thought; who gets pregnant and almost dies?

April 12, 2012 – The Birthday Adventure

Note: This is another graphic post.  Sorry for the gore, I would have loved to live without it myself!

Alright, I am going to try to condense this into the important events so everyone can be updated.  Tuesday around 9pm I started having the same cramping and bleeding that led to my ER trip.  This has been happening at least once a week, sometimes 2 or 3 times a week, but usually gets better after a few hours and some passed tissue and clots.  This particular episode went until 3:30am and was a bit more intense on the pain scale.  When the pain hit it no longer felt like two hands twisting my uterus.  Instead it felt like my whole midsection, from belly button to hips, was being twisted.  It was hard to breathe when this would happen. 

After the pain and bleeding slowed down, I was able to sleep for a couple of hours.  I woke up glad that it was over and knowing it would be at least a few days before it happened again.  I was, of course, so wrong.  Around 9:30-10am it started up again.  At 11 I put in a call to a nurse at my doctor’s office begging for help with the pain.  I told them I could handle the blood and tissue, but the pain was unbearable.  There was no way to get comfortable and the contractions were happening so close together that I just camped out on the toilet to pass the clots.  At noon the pain was so bad I took my dog’s tramadol.  Not something I would normally do, but I couldn’t see straight the pain was so bad.  At 1 I called the office back.  The nurse had posted the call directly to the doctor and they said I should hear back soon.  At 2 she called and said my doctor wanted to see me ASAP.  I told her I wasn’t sure if I could drive, but I was going to try and would be there as quickly as possible. 

I called Doc while I was getting dressed.  He was in clinic, so he could answer, and he said he would come get me.  I of course refused and told him it would just be a quick pelvic, sonogram, and pain meds… again so wrong.  It took me a total of 20 minutes to get dressed and get to the office.  In that time I had passed so many clots and the bleeding was so intense that I soaked a large pad.  While I was changing the nurse knocked on the door to tell me my husband was here.  I love my husband.  He has a way of knowing when I am really going to need him. 

I soaked my new pad in 10 minutes.  When my doctor asked me to get on the exam table I began hemorrhaging.  There isn’t a good way to describe that other than warm, messy and very embarrassing.  I couldn’t tell how bad it was because everything was flowing out of me so fast that I couldn’t tell if it was clots or blood or both.  I did notice my doctor took a step away from the table when he saw it.  He then started getting towels and extra pads.  Doc took a quick peek below the sheet and came up to hold my hand and get out of the doctor’s way.  Not a good sign.  I apologized for making a mess, something I couldn’t stop myself from doing throughout the day.  I feel really bad for the nurses having to clean up after me.  My doctor said the nurses are always mad at him for making a mess, so I shouldn’t worry.  He asked Doc to step out and get a nurse.  He then tried to continue with the pelvic.  Up until this point he had been explaining the many options available to us.  During the pelvic he stopped.  He told Doc that he couldn’t even get a visual on the cervix, the bleeding was too bad. 

My doctor patted my knee and said, “I am sorry, we are out of options.  We have to go to surgery.  Now.”  He left to set it up and his nurse came to try and get me cleaned up.  There is no cleaning up with that kind of bleeding.  They gave me extra maxi-pads and sitting pads.  Sitting pads are basically puppy training pads.  You know you are really bleeding when they break out those bad boys and then big towels too!  They got me a wheelchair and told me we would be going to the west campus for our hospital because it was next door.  We were given instructions to not allow them to put me in a waiting room, but to tell them we needed to be taken directly to pre-op, it was an emergency.  Doc wheeled me to the car and we were off. 

It took 5 minutes to get me in the hospital.  I soaked a pad.  They did try to sit me in the waiting room and for the first time in my life I told a medical personnel no.  She took us back to see the nurse, who was on her own checking all patients in.  She was over worked.  I explained to her that I was hemorrhaging and she found me a room.  I had to change another pad before I could get dressed in my new hospital garb.  My doctor pulled some magic and had me on the surgical board before I was even checked in.  Everyone had to rush to keep up with him. 

We had to get labs and an IV started… I have no places to stick me any more!  It didn’t help that I had lost a lot of blood and my veins were all in hiding.  My poor nurse had to dig into the middle of my right arm; I could only respond with, “Please stop doing that.”  My nurse told me I could cuss at her; I of course refused to do that.  I am a fan of cuss words, but I refuse to cuss at someone who is trying to help save my life.  My doctor came in and let me know his plans for the surgery.  He was going to try and balance the repair without introducing more damage, but let us know it was a possibility that he wouldn’t be able to do both.  I told him we trust him and know that he knows our goals and he is on our side.  I gave him permission to do what he needed to do.  I then told him that while this was an exciting birthday present, next year I wanted a c-section and twins.  He laughed and said he would be very happy with that. 

I was being walked into surgery by 4.  Thankfully, I didn’t end up needing blood.  No one could figure that out.  We all thought I would need blood, so chalk up a win for my body taking care of that!  Doc said it may have also been that my labs were skewed by the amount of dehydration I was experiencing.  I ended up needing 2 liters on IV to get partially rehydrated.  As I walked into the OR I heard my doctor talking to his team like a coach, explaining what he would be doing and exactly what he wanted them to be doing.  He was talking about back up plans and when someone asked about the worst case scenario of a hysterectomy, as it would be easier than the plans my doctor was putting up, he very sternly told them "we won't be doing that to her".  I love my doctor.  I squeezed his arm and gave him a smile before continuing on. 

To help reduce errors in the OR they ask you to tell everyone your name, date of birth, and procedure.  I gave my name, explained that today was my birthday and thanked everyone for coming to my party.  Then it was sleepy time.  My doctor ended up removing a softball sized mass from my uterus.  He said that after examining the rest of my uterus it looked really good, the mass seemed to be the problem and removing it got the bleeding under control.  The mass was sent to pathology because he wants answers, I love that he is just as curious as we are.  He then had to head back to his clinic because he had cleared patients for my surgery.  So the next time you are finding yourself annoyed with the doctor cancelling your appointment for the mystery emergency.  Take a moment to say a prayer for the person they are helping, when they do that it really does mean emergency. 

I am now feeling better than I have in a month.  My uterus and vagina feel a bit like a deflated balloon, but the bleeding is much better (spotting) and the cramping is nothing.  We are just waiting for answers! Happy birthday to me, I survived the most dangerous complication associated with molar pregnancies.  I call that a huge win, major good luck came our way! J

April 09, 2012 – Birthday Surprises

It turns out that my pity party couldn’t have come at a better time.  I did in fact need to be ready to face new challenges the next day.  I just had no clue what was coming. 

My doctor called me the next morning with my labs.  It turns out that when the ER ran a quant HCG (which is only produced by placenta cells) I tested over 9,000.  2 weeks post D&C I should be testing a lot closer to 0.  Wednesday my quant was over 6,000.  My doctor was worried.  He let me know we may be getting ready for some big changes to our treatment plan, but he didn’t worry me with more information.  I knew he was worried enough to call me himself (usually his nurse calls with labs) which meant he was seeing something bigger on the horizon.  I tried to stay calm, but was preparing myself for bad news.  He asked me to come in for labs again this week.  I am actually going to be there on my birthday. L

That evening he called back again to speak with Doc and me.  The test results from the tissue sample taken during the D&C had come back.  The tissue came back with a karyotype of 69 XXY.   The fetus would not have been viable; there was absolutely nothing we could have done to change the outcome of this pregnancy.  What 69 XXY means is that instead of having 46 chromosomes, like most people do (some amazing people have one more or less), our baby had 69 chromosomes.  Somehow our child had 2 copies of Doc’s chromosomes.  That can happen in 1 of 2 ways; either 2 sperm fertilize the same egg, due to an incompetent shell, or during the replication phase the father’s chromosomes are replicated twice.  That information alone wasn’t so bad… but my doctor wasn’t done. 

This type of pregnancy is called a partial-molar pregnancy.  It is characterized by a partially developed fetus and an over developing placenta.  I did not present at all as a partial-molar pregnancy.  Normally women who have this become very ill, very early in the pregnancy, and they normally experience heavy bleeding during the first trimester.  I felt great and had no bleeding during the 1^st 9 weeks of my pregnancy.  I didn’t start feeling sick until nearly 2 weeks after the D&C (what would have been 12 weeks of gestation).  The trouble with a partial-molar (or molar) pregnancy is that the over developing placenta can cause gestational trophoblastic disease and may continue to grow if left in the uterus.  Gestational trophoblastic disease may develop into a cancer (choriocarcinoma).  Because the cells are naturally occurring in the body, if left untreated it spreads easily throughout the body.  However, when diagnosed quickly it is extremely treatable.  If placenta cells from a molar pregnancy remain in the uterus they will continue to consume any new fetus that develops.  Therefore it must be treated.

You might recall that while we had most of the tissue removed during the D&C, we didn’t have it all removed because there was absolutely no sign of this disease present in me at the time and we were hoping to preserve my ability to have children.  My trip to the ER was the first clue we had that there was a problem.  My doctor explained that he wanted to speak with the OB/oncologist before proceeding to create my treatment plan.  I will most likely be undergoing another D&C which will be followed by chemotherapy, but he wanted to make sure that I would have the best care and he was seeking input on whether I should receive treatment here at our hospital or at the University hospital.  Obviously, this was difficult news to hear. 

Was there any good news?  Yes.  The good news is that we caught this.  If we hadn’t had the genetic testing done, we might still be scratching our heads trying to understand what was going on.  Most women who undergo treatment are able to have children once treatment has been completed.  My prognosis is very good.  My doctor explained that my constantly decreasing HCG levels are a very good sign.  There is also the always wonderful news that I have an amazing physician, who is working to make sure I have the very best care and that I am well taken care of.  Finally, thank God we have health insurance!

How are we handling this?  Our heads are spinning.  I mean, who tries to get pregnant and ends up with cancer?  We didn’t even see this as a possibility!  For now we are trying to keep our heads up and are ready to do whatever we need to.  We are trying to get prepared for whatever may come.  I have also instituted a household policy of joking about it.  I just couldn’t handle the reality if we take it too seriously, so we are trying to keep it light.  The running joke around here has become that most guys buy their wives jewelry or take them some place nice for dinner for their birthdays.  Mine gave me cancer.  It was the most expensive gift he could think of. J

April 04, 2012 – The Pity Party

I give up.  Today I have reached my maximum ability to cope.  It has been 23 days since I found out we lost our baby.  It has been 14 days since the surgery to remove tissue for testing.  I have spent 14 days dealing with cramps and bleeding.  I am emotionally and physically exhausted.  Today my doctor informs me that my body still hasn’t really figured out that I am no longer pregnant.  What does that mean?  It means that I still test positive for pregnancy and that my body is retaining tissue from the pregnancy.  It also means we are nowhere near done, and I really need to be done.  We can’t see the new specialist or even begin working towards trying again until my body is healed, but it hasn’t even acknowledged that I am no longer pregnant!  Which brings me to my current state of being; a bawling mess. 

It is time for a pity party.  I don’t normally do public pity parties; I am more of a turn off the phone, stock up on junk food, and watch sad movies girl.  So, why the public notice?  Because I am trying to show all sides of this struggle, and I believe that part of being a healthy person is acknowledging when we have reached our limits. I am at my limit.  I still believe things will be better in the future, I am still going to keep trying and working towards having a family, but for today I am done.  I am done moving forward.  Just for today I am going to sit down and just have myself a good cry.  I am giving myself permission to just be sad and grieve the loss, because it is what I need to do to restore myself for tomorrow.  Tomorrow will bring another challenge and I need to be ready to face it.  So for today I am giving myself permission to be sad, pissy, and to disconnect from the world. 

April 03, 2012 – The ER

Note: This post contains graphic material, because it isn’t possible to discuss the events that lead to our trip to the ER or what occurred in the ER without it. 

Sunday morning I woke up with the cramps that have been a part of my daily existence since March 21^st when I had the D&C.  I have been very fortunate as a woman to have had very light and short monthly periods during my life.  My normal period lasts 4 days.  Day 1 is usually the only day I have cramps and days 3 & 4 are normally just light spotting.  Most of my girlfriends would say this is unfair.  Well ladies, we all know pay back is a bitch. 

Sunday was day 11 of heavy bleeding and cramping, something which I found both mentally and physically challenging as I have never had to deal with anything like it before.  I was having a hard time getting out of bed to face another day of it.  Luckily Doc was home and after some cuddles he managed to entice me out of bed by making cinnamon rolls… he really is a good man.  It wasn’t a horrible start to the day.  By 2:30 things took a turn for the worse. 

I began having intense cramping that would last only a few minutes and then resolve followed by another session of cramping anywhere from 5 – 15 minutes later.  When the cramps were happening it felt like I was going to loose control of my bladder and bowels, they were so intense that I couldn’t feel anything else.  The pain would spike to about a 7 on the 0-10 pain scale.  A broken arm with no pain meds for 12 hours is my 8, so this is some pretty intense pain even if it doesn’t last longer than a couple of minutes.  Shortly after these cramps began I started expelling large blood clots along with the continued bleeding.  By large I mean that the smallest were about the size of a large grape, the largest the size of my palm. 

The rule my doctor had given me following surgery was that if I began to soak a large pad once an hour for a couple of hours I should call his office or go to the ER.  Because I was 11 days out from surgery, I kind of felt silly calling to complain about pain and bleeding, but I called the office (which was closed) and spoke to the 24 hour nurses that the hospital has available to answer questions.  At around 4:30 she paged the on call OB/GYN for my office.  Then I began waiting for a call back.  The call back never came and I didn’t want to go through the hassle of calling the call center again and waiting for another page, so I decided I would just wait for morning and call the office then. 

By 6:30pm the cramps were coming more rapidly and the bleeding was getting even worse.  Doc and I decided we were going to the ER.  I got checked in quickly and we were in the waiting room less than 30 minutes before they took me back to a trauma bay.  There is a hierarchy in ERs.  The more serious the event, the more quickly they come to get you.  I thought I would be waiting for an hour or more… so when they came to get me ahead of all the other people waiting, I became nervous.  Then when they stuck me in a large trauma bay rather than one of the small treatment rooms, I wanted to leave.  If Doc hadn’t been home I never would have even gone to the ER.  I really hate ERs.  When possible I would always rather see my regular docs, who are all fantastic.  ER docs can be a bit rough and jaded.  Not exactly the comforting presence I have become used to by my physicians. 

They took blood and got an IV started quickly.  We had several people come in and do a quick history on me, and of course they had me undress and gown up.  I was allowed to keep my underwear and pad on until they were examining me.  However, as I was sitting there giving my history for the 3^rd time, I realized I had actually soaked my pad and was bleeding through on to the bed.  Things started moving a little faster at this point.  The doc called for an OB consult, so more waiting on a call back.  They started IV fluids, took a urine sample, and let me clean up in the bathroom. The poor ER doc was obviously uncomfortable treating me, and had to wait for several calls from the OB to get guidance on what to do.  By 9:00 he was doing a pelvic.  As I said before, ER docs are not gentle.  At this point I was still living a drug-free life and the contractions (yep, that is what they were) had been getting worse, not to mention the soreness from the surgery and constant bleeding.  The pain of the speculum alone made me gasp.  Then I was crying.  It takes a tremendous amount of pain for me to cry.  Normally when I cry it is because I am emotionally exhausted or frustrated by a situation.  These were entirely tears of pain.  The doctor removed 2 large clots from my cervix.  He said they were putting pressure on my cervix and holding it open.  His hope was that by removing them it would allow things to pass more easily and stop the contractions.  He also coughed up the narcotics at this point.  I have never been so happy to have drugs in my life!  I had 4 more contractions, which were much more manageable with drugs on board, and passed one palm sized clot before everything seemed to start getting better.  From that point on it felt like we were just waiting to be discharged.  Doc had to be up for work at 5 in the morning, so I really wanted him to get some sleep. 

They had several large traumas come in, so we were stuck waiting.  I finally convinced a nurse to remove my IV while we waited.  We had to wait until the doctor had a minute to write my discharge summary and then we would be free to go.  At midnight the doctor comes in and tells us that the OB doesn’t want me going home without a sonogram.  They have to call in the tech, so we have no idea how much longer we are going to be there.  At around 1am I sent Doc home to let the dogs out and to get ready for work.  I had to promise him repeatedly that I would be okay and shove him out the door.  He really didn’t want to leave me.  I told him I would be okay for the sonogram without him and it would save him time when we finally get discharged.  He said he didn’t think they were going to discharge me.  He was pretty sure they were going to be admitting me. 

The sonogram tech arrived before Doc got back so I did the fun internal sonogram by myself.  You know that the bleeding is bad when you watch them lay towels down on the floor before they let you sit on the bed and they hand you 3 towels to help clean yourself up afterward.  So much fun!  The sonogram went a lot better than the pelvic did.  I am sure it helped that I had pain meds on board. 

When I was wheeled back into trauma bay 1, Doc was waiting.  He was all dressed and ready for work.  In true hero fashion he had brought me clean panties and several pads.  At 2am the ER doctor explained his discussion with the OB.  There is visible blood flow to some material in my uterus and they were unable to discount retained materials at this time.  What does that mean?  It means I am having more trouble passing the tissue than we thought I would.  It also means that I may be facing another surgery, not really good news.  It was obvious that the ER doc wanted to admit me, but the OB wanted me to see my regular doctor.  The ER doc was willing to discharge me only if I promised to call my doctor when the office opened.  I promised and we were discharged. 

We were home by 2:30.  Doc slept in his scrubs and had to work a 13 hour day with less than 3 hours of sleep.  He is my hero for sitting by my side and helping me get through this, and for doing it without reservation or being grumpy.  I would have been at least a little grumpy; he is a much better person than I am. 

I called my doctor’s office at 8am.  My doctor was at a conference Monday, in surgery Tuesday, so the earliest I can see him is Wed which is when I was supposed to see him anyway.  His nurse told me that if I was comfortable waiting and the bleeding seemed better (which it is) then it would be okay to wait, however they could see me Monday or Tuesday if I felt I needed to come in.  I am waiting it out.  For most of yesterday the bleeding and cramping was a lot better.  I had some contractions in the evening and increased bleeding, but that may have been because I got tired of sitting around doing nothing and then tried to do too much.  Sitting around doing nothing is not fun.  Watching my house get dirty is not fun.  I am ready for my life to resume. 

March 27, 2012 – The Procedure

I am sorry for the delay in updating everyone on how everything is going, but it has been a rough couple of weeks.  I finally feel like I have the energy to sit up long enough to write something, so here it goes!

I was scheduled for a D&C last Wednesday at noon.  Doc managed to get the day off.  I am really glad he was there with me because I don’t know how I would have managed the day without him.  He was sick, but tried to rally for me.  The fact that Doc was sick for the second time this year should give you a clue as to how stressful this has been.  Doc gets sick once in a blue moon, I can’t ever remember a time when he was sick twice in the same year! 

Wednesday came and we arrived at the surgical center in the hospital for check in at 10.  This was an area of the hospital Doc wasn’t familiar with and it was by far the nicest surgical center I have ever seen in a hospital.  They assigned me a number and updated a board with my procedure so Doc could watch how things were progressing, kind of like watching the flight boards at the airport, and also gave him a pager so they could contact him when the doctor was ready to meet with him after my procedure.  Then they put us in a private room for all my prep. 

Blood draws, IV, and all the fun that comes before any procedure.  Doc and I watched TV, checked out LOL cats on line, and tried to make the best of it.  When my pre-op nurse informed us that my doctor had only scheduled one procedure for the day, we were surprised.  It turned out that his schedule was full on Tuesday, his normal surgical day, and he didn’t want to make me wait another week for my procedure, so he scheduled me on his on call day.  When you live with a doctor, you know how amazing it is that he would give up part of his afternoon before going on call for 2 nights in OB.  It means he was giving up sleep, time with family, or free time just so that I wouldn’t have to wait another week.  It was kindness beyond measure. 

When my Dr arrived he came with a student; it is a teaching hospital after all.  The student was a 3^rd year medical student who had studied pediatrics under my Doc just recently, so a little awkward.  I opted to allow her to observe the procedure so that she could learn more about D&Cs.  Many schools (like my husband’s) have stopped teaching the procedure because they don’t want to seem abortion friendly, so this may have been her only chance to see one.  I know Doc never saw one while he was in school and seeing how important the procedure became to us this week that is a travesty. 

My doctor decided to perform only a portion of the D&C.  We wanted to have the cervix dilated to remove enough tissue for testing and to also start my body’s natural process without introducing a lot of additional scar tissue into my body.  The major risk of the D&C is scarring which can hinder future pregnancy.  I love that my doctor had thought this through and helped us balance our emotional and physical needs during a rough time. 

For the actual procedure I was under general anesthetic, so I remember going into the OR, waving hello to the surgery tech, asking my anesthesiologist to make me forget the day, made a joke that they are perverts because my gown had a pocket which opened directly to my breast, told them to play some good music, tasted something funny, and woke up in recovery.  If you are going to have a bad day, that is how they should all go. 

Recovery turned out to be the longest part of my day and didn’t go quite as planned.  I woke up and must have said something about my doctor, because the nurse said he was right there.  As I woke up my doctor was holding my hand in recovery and we talked about making our next attempt a bit more successful and hoping he would be delivering a baby for us soon.  I have had several surgeries in my lifetime, but I have never had a doctor holding my hand as I recover.  I feel really blessed to have such an amazing physician helping us through this journey. 

Soon after waking up I began having trouble breathing.  One thing asthma has taught me is to notice when breathing is becoming a problem.  The trouble with this is that it means I notice before my O2 stats drop so that I can correct the problem before I am in danger, but at a hospital you aren’t in danger until your O2 drops.  So I calmly tell my nurse that I am having trouble breathing.  This must be something people in recovery say a lot, because she just told me I was fine and checked my O2 stats.  My airway went from feeling like I was breathing through a garden hose to a drinking straw down to a swizzle stick.  I again told her I couldn’t breathe.  She checked my stats, I was fine.  Finally I stopped being able to move air and form words and could only move my lips and cry.  I struggled to sit up in bed, grabbed my nurse’s scrub edge, and mouthed that I couldn’t breathe.  She ran to get the anesthesiologist and they started injecting things into my IV.  Slowly I could breathe again, but it was through a swizzle stick and I was making a horrible sound as I tried to breathe.  They said it was a laryngospasm, basically my vocal cords clamped down and wouldn’t allow air to move.  It sucked and scared the crap out of me.  My O2 stats finally dropped and then the computer said my O2 monitor was faulty… after the crises had passed. 

I apologized to my nurse for grabbing her scrubs, and she let me know it was okay and that she understood I was scared because I couldn’t breathe.  I will never understand why people treat their nurses and doctors poorly while in the hospital.  It is like yelling at your waitress and then not expecting to eat her spit with your dinner.  These people worked hard to make sure I was okay and well cared for on a really bad day of my life, I am thankful they were there and so kind.  These were truly the best nurses I have ever had caring for me (with the exception of my mom of course).  They treated me with kindness and compassion.  When they checked me for bleeding they allowed me to retain my dignity as they did so.  Really they were excellent. 

After several hours in recovery we were finally allowed to leave.  My post-op stage 2 nurse walked me to the car and wished us good luck on starting a family.  She was very kind.  For the next 2 days the majority of my complaints were neck and chest related.  My neck was very swollen and painful, so much so that even the muscles in my face hurt and felt pulled on.

This weekend is when my body finally figured out we were having a miscarriage.  It has made for a rough and exhausting weekend.  I will spare you guys the gory details.  Needless to say, it is a heck of a lot worse than any period I have ever had.  I slept for 20 hours yesterday.  I only got up to use the bathroom, eat, and wish my dad a happy birthday. 

Doc had to return to work and doesn’t get home until after 8 each day, so I have had to take care of myself.  It has been scary, hard, and lonely, but I really only want him around me, so I keep going it alone.  I know he wishes he could be home more, and I wish he could be home more, but he is needed at work.  We have had an amazing out pouring of support from the hospital.  Offers to bring me treats and walk our dogs.  People have been very kind and I may actually be finally feeling up to seeing people again.  Every day I hope the worst is behind us.  So far I have been wrong, but I’ve been up for 2 hours today and so far so good! J

March 14, 2012 – The Art of Being Grateful

Note: This blog is a bit on the self-indulgent side, but seeing as it is my blog, I’ll allow it. J

Most people don’t know what it is like to have struggled with a long-term goal.  By long term, I mean taking longer than 4 years to complete (note this says most, I am fortunate to know a lot of amazing people who have achieved this task and am not discounting them, but they are in a rare group unto themselves in our country as a whole).  Most people won’t ever know what it is like to work at the same goal, everyday, for 10 years.  They won’t know what it is like to sacrifice and struggle for 10 years in the hopes of attaining 1 goal.  Most people won’t know what it is like to do these things for themselves, much less to have done them for someone else’s goal.  I do.  From the moment Doc decided to become Doc, it took sacrifices on both our parts.  It took both of us to achieve this goal.  It took both of us working, saving, struggling, and borrowing nearly 1 million dollars (payoff amount, not actually the amount borrowed) over 10 years to obtain this single goal.  And we still aren’t done.  So, what does this have to do with being grateful and our current situation?  It is the story of how I learned to be truly grateful, for every small gift I have been given in this lifetime, and how I will survive the loss of our second child. 

About 4 years into the sacrificing and struggling I began to feel exhausted.  Feeling like I was working so hard, every day, and not seeing any benefit from my work made me sad, angry, and bitter and every day brought more work and still no benefit.  Every day was filled with crummy chores and tasks to accomplish: pay bills (with no money), study for classes, go to work, do research… It felt like it was never going to end, and to be fair the end wasn’t anywhere in site.  Then Doc got into medical school, and suddenly we needed to move.  I left the graduate program I was in, which really was for the best, as it was making me miserable, and I had to start a new graduate program which was hopefully going to be a better fit for me.  However, the problem was it was more than an hour away from the medical school Doc was attending.  That was problem 1.  Problem 2 was that it wasn’t a PhD program, so I knew I was sacrificing my own goal for that of my husband’s.  (Actually, I didn’t learn that until later.  I was still young enough that I thought I would have plenty of energy and drive when Doc was done and I would complete my PhD at that time.  Dumb.)  The 3rd problem was figuring out how to not give up on all of my personal goals and still manage to support us for the next four years.  Any money Doc earned during medical school would be taken directly out of his student aid from the school, so if he worked it wouldn’t really benefit us.  I was offered a job through my graduate program, and I took it.  Within a few months of us both starting school it became clear that the additional aid from this job wasn’t going to be enough.  The drive to school alone was sucking down a fortune, despite my Civic’s excellent gas mileage.  I got a second job, working holidays, weekends and overnights (eventually I would take on a third job while in grad school, but you get the point).  We were managing, but not comfortably and I was becoming increasingly bitter at my daily struggle.  I was becoming depressed, angry, and just more miserable every day.  I would look around at my classmates and be jealous that none of them had to work.  They had parties on the weekends, I had 16 hour shifts.  They always had the readings done and were always prepared, I felt like I was always playing catch up.  It was an awful place to be and I didn’t want to be there any more.  I wanted to be happy. 

I started to change all of that by reminding myself that life is full of lessons and that in this struggle was a lesson to be learned.  I believe that when life gets really hard, it is usually because I am ignoring whatever lesson God has planned for me and the moment I figure out what it is, things seem to get better.  I knew part of my problem was that I was focusing on what others had, without considering what they were giving up to have it or the struggles they were facing.  I was entirely too focused on other people.  It had to stop. 

I wrote myself a simple reminder on a sticky note and stuck it to my mirror where I would see it every morning and every evening as I brushed my teeth.  It simply said, “Be Grateful”.  I challenged myself to find something to be grateful about every time I looked at it.  It was hard at first, but eventually it became a mantra.  My 16 hour shift turned into an 18 hour shift? “I am grateful to have a job when so many others do not.”  Dog needs a $2,000 hip replacement surgery?  “I am grateful for the joy she gives me every day, and that we have access to such amazing vets to treat her.  I am grateful that I have a credit card with that much space on it.”  Stuck in traffic after already putting in more than 80 hours this week?  “I am grateful to have a car to drive.  I am grateful to have a place to be going home to.  I am grateful that my bladder isn’t full.  I am grateful for the song on the radio and the extra time to jam all by myself.” 

Slowly, this simple act of being grateful changed my life.  It became a way of life.  It made it easy for me to not focus on others and instead for me to give my life the attention it deserved.  It made me see that jealousy is a wasteful and pointless emotion.  You can’t be jealous of one thing in someone’s life; you have to be jealous of everything in their life because the good things don’t come without the bad.  Everyone has struggles to face.  And best of all, it made it impossible for me to feel bitter, angry, and put upon by my situation, because I acknowledged that my situation was a choice I made and I was grateful to have the choice to make. 

So, how did this life lesson and change in perspective gain entry into a blog about infertility?  Every moment since our sonogram I have been finding reasons to be grateful and tonight when I was awoken with cramping, nausea, and a hot flash so bad I had soaked my bed sheets in a room that is 67 degrees and the thoughts started rolling through my head: “I am waiting for my body to expel our second child.  I am a mother with no child.  I am heartbroken.”  At 3am, as I put down a towel to lie on, so that I could try and sleep (because being able to sleep through this would be easier), I found a way to be grateful.  I began listing all of the things I am grateful for to myself:

I am grateful that the sonogram tech was so compassionate.  I am grateful that our doctor struggled to control his emotions as we cried in his office because it made us feel like a team.  I am grateful that Doc was there with me.  I am grateful that he has been within arms reach for 2 whole days.  I am grateful that the residency gave him time off to be with me.  I am grateful that they didn’t make getting that time off into a battle between family and career, they just let me win.  I am grateful that my dogs lay on my legs for the past 2 nights as I tried to sleep, just so I would know I am not alone.  I am grateful that I have my internist’s cell number so I didn’t have to call the office staff and explain to them what happened.  I am grateful that she cared so much that in the middle of her busy day she cried with me over the loss.  I am grateful for the amazing outpouring of support that our friends and family have provided.  I am grateful that we were not further along and that our child did not suffer.  I am grateful for 2 amazing pregnant months, I know it is more than some get.  I am grateful that I have such an amazing husband.  I am grateful I am not alone.  I am grateful that I know what it feels like to be a mother and that Doc knows what it feels like to be a father.  I am grateful for our amazing medical team.  I am grateful for the addition of another member to that team. I am grateful that I have better medical care than Oprah and that our child will have better medical care than Paris Hilton.  I am grateful for the love I feel for others and coming from others.  I am grateful that I started this blog so I have a place to put this all down and get it out of my head…

And finally, the thing that shot me out of bed to write this down? I am grateful for the 10 year, still on going, struggle that we have had, because without it I wouldn’t know how to be grateful and loosing our second child would have destroyed me.  Does this mean I am not sad?  No.  Does it mean I am done grieving?  No.  It just means that I know each day I will find a new reason to be grateful.  I know we will lock hands and keep putting one foot in front of the other until we are able to gain some perspective on the situation.  At least that is how I feel tonight, and I am grateful for the relief from the sadness.