Infertile weirdness

I met the new man of a friend the other night.  I knew when she first started seeing him that he wasn’t interested in meeting her friends.  I don’t know whether that was an accurate reflection of his feelings, or whether he was a bit shy or nervous.  I have a theory, but no evidence to support it, so will keep quiet about it.  Anyway, they've been seeing each other for a long time now (over a year), and this was our first opportunity to meet him officially.

It was to be a cosy evening in by the fire, getting to know each other, and catching up with my friend.  In general, he was as she had described him, and we got on fine.  At least he would engage with us, unlike her ex.  But there was an odd moment, one which I chose to ignore at the time, and just get through the evening, but one which I can't fully let go.  He raised a discussion – tell me why – about an item he had heard on National Radio about breasts.  (Yes, we stopped for the obligatory jokes about men and breasts as we tried to break the ice).  He had been surprised to learn that women’s breasts don’t “fully mature” until  (note the use of until rather than unless) they have breast-fed, and that breast-feeding reduces the woman’s risk of cancer.

Well, yes.  I knew that.  A few years ago, as studies came out trumpeting these legitimately important results, I felt more and more marginalised.  But I thought I’d come to terms with this.  There's nothing I can do about it, so these days I usually just shrug and move on.  His choice of subject gave me a twinge though, so I just said I knew that, nodded, looked at my husband, and changed the subject. 

I want to think that he was a bit nervous and was trying to find interesting topics of conversation.  I want to think that he didn’t think.  Because I know if there is one thing my friend will have told him about us, it will be that we don’t have any children.  And I strongly suspect she will have added the point that we tried to have children, but couldn’t. But you know, I have this grating feeling that it was deliberate, even pointed. I can’t imagine why, so I’m just going to say that obviously I am a bit paranoid (missing out on breast-feeding a child is one of my great regrets), and obviously I have read far too much into this. 

Infertility really screws with your mind, and potentially your friendships, even years later.

         

Grateful Friday

So much discussion around infertility is about what we’ve lost, about pain and grief.  But we don’t have a monopoly on that.  No, this isn’t another Pain Olympics discussion.  This is simply a fact of life.  Yesterday my husband heard that a friend of his, who we knew has been battling the return of melanoma, is to be given no further treatment against this very aggressive (and sadly very prevalent) cancer.  She said “it’s a case of each day as it comes, sorting my stuff out, and setting up X (her son) for the future.”  And so last night, as I was frying onions and revelling in that delicious aroma, I knew she was figuring out how to tell her son.  And I thought that I owed it to her to do as she is doing – to take each day as it comes, and to be grateful for what I have.

So today, on this autumn Friday, I am grateful for :

1. My husband
2. Frying onions
3. This lovely autumn we are having
4. The tui chattering away in the trees outside my window
5. The morepork I heard in the trees last night
6. The fact I can see and hear our native birds
7. Our slightly wacky, in-need-of-maintenance, but interesting house
8. The sun streaming through the windows, warming the house
9. The beautiful views from my house (check out the header image on A Separate Life)
10. Friends – in real life and virtual
11. The fact that my last post resonated with so many people
12. That after a few years of hard work and investment, the company I used to Chair is on the verge of a big contract
13. My health – because I’m feeling okay right now, and I will not under-estimate the importance of this, not now
14. The fact I could – if I chose - buy whatever I wanted at the supermarket today
15. The good quality, reasonably-priced, delicious Sauvignon Blanc that I plan on drinking tonight ...

... and much, much more ...

The Pain Olympics

There’s a lot said in our community about the Pain Olympics – that there shouldn’t be a judgement about who has the most pain, who has it worse.  I’ve been hearing this for ten years.  And I will admit that I’ve never been completely comfortable with it.

I don’t agree that there are no degrees of pain, that all pain is the same.  It’s not.  My stubbed toe is not as painful as your broken arm.  Your broken heart is different from my hurt feelings.  Speaking personally, my TGN is worse than my virus, and right now, much scarier than my infertility. 

But that doesn’t mean we are not allowed to feel those feelings.  Just because someone might be grieving or hurting worse than us, it doesn’t mean that our own pain is not legitimate, and that we’re not allowed to grieve.  Anyone grieving, hurting, vulnerable and/or stressed deserves our sympathy.  

I am going to speak personally here though.  It helps me to put my own pain into perspective.  Perhaps it is easier for me to do this now, because I’m no longer infertile (ie I am no longer trying to conceive), because I’m comfortable with my life, because I can look back and see my progress.  My pain when I lost my first and second pregnancies, when I thought I was facing cancer, and when I learned I would never have children – this was real pain, and intense.  I struggled to pull out of it.  I remember being told I might have cancer.  I couldn't process it, and focused only on the grief that it would mean I couldn't have children.  That was the bigger pain for me at the time.  My doctors and nurses couldn't quite understand it - but it was my pain, and it was legitimate.  Still, even then, I knew that at least (at the time) I had my health, I was financially secure, I had my brain.  I knew that there were others worse off than me.  And I think that perspective was important.  It allowed me to pull myself out of the doldrums.  It allowed me to move on.

As our pain fades, I think it is only appropriate to be able to put it in perspective.  As new pains emerge, it is then easier to put them in perspective too.  Perspective is important.  But I’m talking about our own, personal perspectives.  We do all stand and judge other people’s pain, even if we try not to.  It is inevitable.  Other people might look at me and say “you never had anything, you never lost anything, you don’t deserve to feel pain over your pregnancy losses, over the fact you can’t have children.” We all know that’s not true.  I know what my infertility has meant to me in my life.  They don’t.  Equally, I can’t try to tell anyone that their pain is less or more than mine (even if I think it).  I can however tell myself where my pain fits on the scale.  And I will. This doesn't mean I don't let myself grieve.  I do.  (Believe me, I've cried a few times the last few weeks).  But I also remind myself when I should be grateful too.  If I didn’t do that, if I didn’t develop that perspective, I could drown in my own pain, and yes, my own self-pity.  If I didn’t put my pain into perspective, I think I’d struggle to understand that I have a glass half full, not half empty. 

Even now, after three of the worst weeks of my life, I know that I am lucky.  My TGN pain – touch wood – seems to have receded, and for now at least, I am pain free.  And I think of the others who have TGN who are not pain free, and I feel for them.  And I look out the window, at this beautiful autumn day, at the blue sky, at the setting sun on the trees on this last day before we put the clocks back for winter, and I can breathe in, and feel good.  Because I know, that right this moment, I don’t have it so bad. 

Emotions of Loss - Part 2

Going through an ectopic pregnancy for a second time, initially, was not as scary.  I knew the hospital, the staff, the tests, and the terminology.  Yes, I was emotional, but I recognised the grief.  But as the process became more and more drawn out, I couldn’t understand why I continued to be so emotional.  I’d been through this before.  Surely I should be coping better than this?  Couldn't I just brush it aside and get on with recovery?  But I learned there is no Get Out of Jail Free Card in grief, even if you have been there before.  Grief compounds grief.  My hopes had been high, and were dashed.  I had been stressed and emotional.  In retrospect, it’s not surprising I found it hard.

Our expectations, our hopes and dreams, changed hugely over a matter of weeks.  From the positive pregnancy test when we hoped and believed it would be okay, to the time when we realised we’d lost the baby, but hoped and believed it was “only” a miscarriage.  To finding ourselves hoping and believing that it was “only” an ectopic pregnancy, not cancer, or that if it was cancer, it would be easily treatable.  Worst case scenario – the meaning of those words changed dramatically over those weeks. 

I was in disbelief.  I knew ectopic pregnancy was dangerous.  But I didn’t know there were other ways a pregnancy could kill me.  And I was torn between fear that I might have cancer, and fear that having cancer might mean that I could not try to conceive again for at least a year.  With pregnancy hormones swirling about in my body and brain, I was more concerned with the consequences of cancer on my fertility, rather than the consequences of cancer on my life.  I was able to look at myself at the time, and be amazed at this.  But it didn’t change the way I felt.

The results were a relief.  But the ongoing surgeries and procedures necessary to resolve my pregnancy, each one with their own real dangers, were tortuous - more so emotionally more than physically.  It was the uncertainty, and the waiting - the months of waiting before I even knew if I could try again - that I found incredibly hard.  I was more stressed than I had ever been.  After all I was 40.  Time was running out.  And I was panicking. 

Ectopic Awareness Raising – Part 2

Warning:  This post may well contain TMI.

Just over a year after my first positive pregnancy test, I conceived again, but this time it took the help of a fertility specialist.

I had a strong, early, positive pregnancy test.  I had traditional pregnancy symptoms – fatigue, even nausea.  How I relished that nausea.  With a history of one ectopic pregnancy, my doctor wanted me to get blood tests and an early scan (at about 6 weeks pregnant).  In fact, she’d given me the forms for blood tests even before I got pregnant, and just said – use them.  The tests would tell if my hCG levels were rising appropriately.  They’re supposed to double every 2-3 days.  If they don’t, then the pregnancy is possibly an ectopic.  But I got my positive close to the end of the year, and I couldn’t get the tests done as we were travelling south for Christmas.  I figured I could wait and get that scan after the New Year.  After my experience a year earlier, I knew the symptoms of an ectopic, and I knew to get to the doctor if things weren’t right.  So I relaxed, we both relaxed, and enjoyed it. 

Until things started going wrong.  Bleeding.  Lots of it.  Too much.  None of the classic ectopic symptoms, though.  Pain, for example.  Any woman of child-bearing age who has abdominal pain should be tested for pregnancy, and an ectopic should be ruled out.  It saves lives.  But we don’t all get pain.  I hadn’t had any pain with my ectopic the previous year, so I knew that pain – whilst it is a common symptom – didn’t have to be present for my pregnancy to be ectopic. 

At the end of December, after I returned home, and things deteriorated, I began an interminable process of hospital visits, and blood tests.  This time though my hormone levels were high. The doctors treated me for a miscarriage, then an incomplete miscarriage.  But my levels continued to rise.  I ended up in hospital, having emergency exploratory surgery and a D&C.  “You’ve miscarried,” I was told.  “There was no sign of an ectopic.”  I went home, looking forward to recovering, then trying again.  But once again, the quality of the health care I received probably saved my life.  They continued to check my blood levels, and waited for histology results.  My levels continued to rise.  Obviously this was no miscarriage.  But it wasn’t a viable pregnancy either. Finally, after many more days, more scans, and many more long, boring, worrying hours waiting at the Women’s Health Assessment Unit, I was diagnosed with a second ectopic pregnancy.

To be more accurate, this one was a cornual ectopic pregnancy (now more accurately called an interstitial pregnancy).  Only about 1-2% of all ectopic pregnancies (themselves about 1-2% of all pregnancies) are cornual.  So they are rare.  This type of pregnancy almost makes it to the right place, but not quite, implanting in the area where the blood supply enters the uterus.  This was probably why my hormone levels were so high – compared to a fallopian tube, there was room (and a blood supply) here for the pregnancy to grow.  It is as a result one of the most dangerous types of ectopic pregnancy; if it ruptures, the outcome is potentially catastrophic, as you can bleed out within a very short time. 

Normal protocol for an ectopic pregnancy is to treat with surgery if your hCG levels are over 3-5,000.  Mine were at 14,000.  But surgery itself was too risky.  It could result in too much bleeding, and potential loss of some or all of my uterus.  So again I was treated with methotrexate.  But this time I wasn’t allowed to go home.  The risk was too great, they said.  The 30-40 minutes drive between home and hospital could make the difference between life and death.  I had to stay in hospital until my levels dropped – normally this takes about a week.  I was not happy about this.  But they didn’t drop.  They doubled.  The doctors were worried.  They were concerned I might have a molar pregnancy or more aggressive trophoblastic disease, when the pregnancy cells go rogue, and can metastasize throughout the body.  I was assigned a gynaecological oncologist.  I had a chest x-ray and a CT scan.  It seemed to take forever to get the results.  Finally they came in.  I was clear. 

And after a week, my hCG levels plateaued, and I was sent home.  It took another week for my levels to begin to fall.  I felt as if I was getting out of the woods.  But the nightmare wasn’t quite over yet.  It took another five-six months, two more hospital procedures/surgeries, numerous visits to the wards and WHAU, blood tests, stress and tears, before I was given the all clear to try to conceive again.