Category Archives: Medical issues

Distance is relative

If you had asked me back in 2009 or 2010, or anytime really between mid-2007 and May 2011, whether I lived close to my parents, I would have said yes.

Sure they were several hours away by car, but what was that when compared with the 24 hour odyssey that had been our normal when we still lived down under.

After E. was born, I noticed the distance a little more. But with Q’s relatively flexible work schedule (particularly when he wasn’t teaching on either a Friday or a Monday) and my freedom as a PhD student, it wasn’t all that difficult to find time to make the trip.

When E. started nursery school, I noticed the distance a little more. I started to notice the grandparents who picked up and dropped off or even did duty days. I started to realize just how many people I knew had parents who lived in the same city. But it was just nursery school and we had no problem taking E. out for a day or two if we were going to be away.

This year, the year that E. started real school, it hit home just how inflexible we were about to become. We still could, in theory, pull E. out of school for the occasional day (especially since neither JK nor SK is mandatory), but both Q. and I think that sets a bad precedent. Plus E. was already going to miss so much school going down under for Christmas we didn’t want to compound that.

We discussed it with both sets of grandparents. No problem, they said. We’re retired. We’re footloose and fancy free. We’ll come to you.

Except now, of course, they can’t.

In the grand scheme of things, my sisters and I do live relatively close to our parents, especially when you compare our current residences with where we’ve lived in the past. We’ve had one or even two of us out of the country more or less continuously since 2002 (with a brief gap in the late 2000s when we all lived in the same city). Now we’re all back in Canada, two of us more or less permanently settled in cities an hour apart and the third at least based in the same city as I am (although she is harder to pin down).

Yet we are all just that little bit too far from our parents to make a weekend visit manageable.

We can’t have a standing dinner date.

We can’t stop in to the hospital for an hour on our way home from work just to see how things are going.

I can’t, when this baby comes, pop round to visit in between naps and nursing.

For any of us to travel to see them requires planning, scheduling, and, most of all, time.

For me, come mid-May it is going to become well-nigh impossible for a few months. Leaving aside the planning and the scheduling and the travelling, I can’t take an unvaccinated baby into an ICU. Nor am I much of a help if I descend with two kids on my mother or my stepmother. I can’t take them into the hospital with me all day, and bringing them with me means that my schedule becomes dictated by their needs rather than by what I can do for my father or stepfather.

I used to wish we lived closer to my parents so they could help us out on a more casual basis with babysitting E., both because they so obviously adore spending time with him and because I am far less nervous about leaving him with family.

Now I wish we lived closer so I could do more to help them.

We’re still not far away, not in the grand scheme of things.

But the last six weeks has really brought home that we’re not all that close either.

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Filed under Butter scraped over too much bread (a.k.a. modern motherhood), Family, Medical issues

Boxes

I think of my worries in boxes now.

I have so many of them, I can’t let them all come out to nag at me at once.

There’s the “worried about my Dad” box, which is huge and overflowing. It resists my every effort to close it. Sometimes I manage to get the lid down a little way, but it always springs open again.

Now there’s the “worried about my stepfather” box, which is smaller than my father’s worry box, although growing rapidly (much like his tumor). The worries were there before but they were mostly lumped in with general worry about my family. But now, after Thursday’s CT scan, he has a box of his own. A subsidiary of this box is the “worried about my Mum” box, which is really attached to the “worried about my stepfather” box, because what I am mostly worried about with my Mum is how she will cope if my stepfather dies. No one has said to me that my stepfather is going to die, and certainly the doctors are quite confident that there are things they can do, but I think the odds of this cancer killing him (or causing another cascade of medical issues that eventually prove fatal) are much higher than they were with his first bout, and I am very very worried.

There’s the “worried about the baby” box which has fluctuated in size significantly over the course of the pregnancy, reaching its maximum size after the anatomy scan. The follow up scans this past Thursday showed that everything continues to go well and that the right kidney is bigger than would be expected at this stage, suggesting it is doing exactly what we hoped it would- growing to compensate for the missing one. I had just about succeeded in wrestling that box closed until I learned that my stepfather is in renal failure because of the way the tumor is encroaching on his kidney. It is not that I think it all that likely that my baby will also develop colon cancer that will affect the kidney when s/he is approaching 65, more that this is a situation where it is a VERY GOOD THING that my stepfather has a backup kidney, and this of course reminded me that our baby has no backup. So I am back to worrying irrationally about the baby, although I am trying to curb this because I can only worry so much for so long without losing all ability to function.

The “worried about the baby” box also contains the usual post-infertility worries about the baby dying at birth or just before from a cord accident or some other tragic, incredibly unlikely occurrence that somehow feels not all that unlikely right now given my family’s current strike rate for freaky, fluky, unexpected medical disasters (see: my father being paralyzed for life by a wave as exhibit a, and my stepfather’s colon cancer that is not behaving like colon cancer usually does and is thus a source of great interest to his doctors as exhibit b).

And then I worry that all this worry is bad for the baby, because s/he is certainly not getting an optimal uterine environment right now. So that’s in the baby box too.

Then there’s a “worried about work” box, which is only allowed to get my attention when I have to do something related to the very next class I have to teach. Marking and seminars and conferences are not on my radar right now, even when they should be. I am very much in survival mode and just taking these last three weeks of the semester one day at a time.

My general worry box about all the other aspects of my life (E., Q., the cats, the house, the rest of my family) has been shoved to the back of the stack because I just cannot open it up right now. We still have not entirely sorted out the vomiting cats issue (in fact we think the food change has stopped one cat from vomiting but caused another to start getting hairballs), but I cannot put any time or energy into fixing it right now. I am vaguely aware that I am asking an extraordinary amount of Q. at the moment, but cannot rouse myself to try to rebalance. I try to be present for E., but it is harder than it should be.

It is all starting to become more than I can cope with.

I am either numb or exhausted most of the time.

I am not depressed- I have been depressed before and I know what it feels like- but I am struggling, even more so than I was a month ago. It is unrelenting. There is no end in sight.

And now I am officially worrying so much that it is affecting my sleep. For the last week or so, ever since my Dad had a conversation with my sister where he was able to express his own worries about what is going to happen to him and how the decisions will be made, I have been waking up at 5 a.m. or earlier and I have not been able to get back to sleep. This used to be standard operating procedure for me, but I fixed this well over a year ago (or possibly two years ago- I have lost track) by taking my mother’s insomnia advice of refusing to get up or do anything else but lie there and wait to fall back asleep. I retrained my brain and my body and I have slept exceptionally well ever since.

Now I wake up for no reason in particular at some stupidly early hour and my brain immediately tries to fix the worst-case scenario. Typical would be waking up to have my brain start planning how we might convince my mother to move to our part of the province if my stepfather dies and whether she would be able to afford to buy a condo and would she want to be in a condo and what would happen with my grandmother but it would be great for my mother because she would have all the support and access to good transit options to go see her siblings when she doesn’t want to drive, etc. etc.

This is not something I should be trying to fix. This is not something I should even be thinking about. But my anxiety has always manifested itself as catastrophizing- I jump to the worst-case scenario and try to fix it. So I know this is my anxiety seeking an outlet, because I am bottling it up as much as I can during the day to get through. But it is impossible to turn your brain off and go back to sleep once you are engaged in thinking about worst-case scenarios, even when you know that they will hopefully NEVER HAPPEN and you are completely wasting your time thinking about them.

I am really good at planning and organizing. It is one of my strengths.

At five in the morning, though, I’m coming to realize it is also one of my greatest weaknesses. Because my brain seems to think I can plan and organize my way out of these crises, that if I can just get enough details sorted out and enough ducks in a row, everything will get better.

I don’t know how to make my brain understand this isn’t helpful.

And right now I’m too tired to even try.

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Filed under Anxiety Overload, Family, Grief, Me? Pregnant?!, Medical issues, Sleep

On superstitions

I am not, by nature, a superstitious person.

Nor do I believe that everything happens for a reason.

I am an agnostic.

I believe life is random and the universe even more so.

But there are times I really start to question this.

You know the saying “bad things come in threes”?

I have been resolutely ignoring the small voice in my head that has been chanting this ever since the missing kidney and my father’s accident.

But now I’m just about willing to believe in it, if only because it might then mean that the universe will stop shitting on my family.

Yesterday I had my follow up scan at the hospital where I will deliver.

The scan was fine- the baby is perfect (except for the missing kidney) and the existing kidney is getting bigger to compensate just like we hoped it would. The specialist and the paediatric specialist both told me there is nothing to worry about with this pregnancy.

The last time I was in that hospital was the 4th of February- the day my father had his accident.

Yesterday I got out to discover my stepfather has another tumor in his bowel. We don’t yet know whether it is the original cancer which has metastasized after three years or if it is a new one. What we do know is it wasn’t there less than a year when he last had a colonoscopy and now it is big enough that it has broken through the intestinal wall and is affecting the kidney. So whatever it is, it is moving very quickly. Which, when it comes to cancer, I don’t think is ever good news.

As labmonkey said when we talked on the phone, “I don’t know how to go any more into shock. I don’t have any further levels of crisis to reach.”

It’s unbelievable.

But it’s happening.

FUCK 2016.

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Filed under Anxiety Overload, Family, Grief, Me? Pregnant?!, Medical issues

The Unimaginable

Here is a list of things I was worried/annoyed about on Thursday night at dinner (in order from least to most worry/annoyance):

  1. E. had learned a new song at school that week that was entirely made up of the names of fast food restaurants. This song was taught to him by his teacher.
  2. I smashed one of the espresso mugs that was my anniversary present to Q. last year (pottery for the eighth anniversary).
  3. The baby has only one kidney.

Here is the only thing I have cared about since:

My father was in a freak accident while on holiday in Barbados on Thursday. Specifically, he was playing in the waves and got caught by one unprepared.

He broke his neck. Specifically, he fractured the C2, C7, and T1 vertebrae.

He was airlifted back to Canada on Saturday and is in an ICU in his home city (not where I live, but not super far away either).

He is currently paralyzed from the neck down and unable to breathe on his own (that’s the C2).

We have been told by the ICU doctor that we need to prepare ourselves for the worst case scenario, which is a complete break of the spinal cord at the C2, which will likely mean permanent paralysis and a permanent need for a ventilator.

They ran CT and MRI scans yesterday and I am currently just waiting for someone to call me once they get the full report. Essentially, I am waiting for someone to confirm what we already know: our lives have changed forever in one instant, and my vibrant, healthy, strong father, my father who loves to ski and bike and golf and swim and wrestle with his grandson, no longer has a body that works.

I went to see him this weekend with my sisters and my brother-in-law to be. He is aware and alert (when not sleepy). He has no brain damage. Using a spelling tool rigged up by labmonkey he was able to move beyond “blink once for yes and twice for no” to ask us questions and tell us he loves us and he is glad to be home. He was concerned about the baby. Everyone is concerned about the baby, largely because my uterus completely freaked out on Friday with the cortisol and adrenaline flooding my system from shock and lack of sleep. It is much better now I have seen him. I have been in touch with my midwife and I know what is normal and what is not.

I came back on Sunday because I had to teach on Monday. Next week is my reading week, so I will be able to go back and swap out with one of my sisters, depending on what the situation looks like and what the next steps are.

It is real and it isn’t.

I know I am in shock.

It’s when I try to explain it to someone else that the magnitude of it hits me, the sheer, mindless, randomness of it.

A wave.

A FUCKING wave.

How?

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Filed under Anxiety Overload, Family, Grief, Me? Pregnant?!, Medical issues

All is as well as it can be

I’ve spent seven hours in the last two days in two of the best hospitals in the province, if not the country.

The baby has been scanned to what really is an excessive degree (but as the radiologist at the second hospital was telling me today, even when the hospitals are linked to share reports, it’s only documentation. They never share images. And no radiologist will trust another radiologist’s report if they can’t see the images that were used to determine the report. So I’ve now had three anatomy scans in nine days. The only bright spot is the two hospitals will only be able to partially bill the province for their scans, as you can only bill for one anatomy scan per pregnancy.)

The end result of all of these scans is as follows:
1. The baby is very flexible and can put his/her feet over his/her head and then play with his/her toes, wreaking havoc for techs who are trying to get clear images of one hand or one foot with no apparent extraneous digits.
2. The baby is growing normally and looks great.
3. The baby still has no left kidney. It is not hiding in the pelvis and there is no artery leading anywhere on that side like there is on the right. All techs and radiologists are quite sure it is not there.
4. The right kidney looks perfectly normal and appears to be functioning well as the amniotic fluid levels are good. The baby helpfully voided the bladder during the scan at the first hospital, which is another indication of a working kidney. The kidney is not any bigger than one would expect, but the doctors think it will probably get bigger to compensate for the absence of the other one.
5. The baby quite possibly will have some anomalies in the genitals, but we’ll have no way of knowing until after s/he is born. Possibilities include a missing fallopian tube or ovary or testicle, or issues with the vas deferens, or an oddly shaped uterus. Nothing we can do about this and we’ll just have to wait and see. It’s not uncommon with missing kidneys because the systems are linked to the same point of development.
The plan going forward is as follows:
1. Scan again in 5 weeks at the hospital where I will be delivering to check fluid levels and see if the right kidney is getting bigger, plus a consult with the paediatrician there to sort out what sort of tests will need to be run after birth. I am anticipating a referral to a paediatric nephrologist at the children’s hospital, and I may well meet with him/her before baby arrives just so we have everything in place.
2. Ultrasounds at some point for Q. and I to confirm that we each have two kidneys, as we don’t have proof of this. The genetics counselor wants to be sure it is something random and not something inherited. She’s pretty sure it is, but would like to just check off that box. Apparently unilateral renal agenesis (which is the fancy term for being born with one kidney) is around 1 in 1,000 births.
There is nothing in this diagnosis that requires me to move my pregnancy out of the care of the midwives, and there is no reason to think the baby will need to stay in the hospital after birth- the tests can all be done as an outpatient. Since we opted to do the Harmony screening, we already know the baby has no chromosomal issues. The only way to get more information would be through an amniocentesis. Both the genetics counselor and the maternal fetal medicine specialist offered it, but both also agreed with my assessment that there is no medical indication right now that such testing is warranted or,  indeed, likely to tell us anything more. From my point of view, it’s a no brainer- invasive test with a risk of miscarriage (even if very low) to probably not learn anything more? No thank you.
Oh yes, and 3. I am now referring to this baby as Phaselus (or P. for short) for the duration of the pregnancy, which is Latin for kidney bean.

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Filed under Me? Pregnant?!, Medical issues, Midwives, Ultrasounds

H is for Healthcare

Microblog_MondaysWhen we were in the trenches fighting to get our E., I was grateful, over and over again, that we lived in a big city in Canada. Sure, we spent an awful lot of our own money on infertility treatments, but I knew that there was so much more that was covered under our provincial healthcare: my laparoscopy, E.’s labour and delivery, the D&C after we lost pregnancy #2, the referrals to an endocrinologist to monitor my thyroid, etc. etc.

And because we were in a big city, I knew I was getting the best possible care. I had problems with Dr. L., certainly, but I never doubted that I was at an exceptional clinic.

Now I have reason to be grateful all over again.

I have an appointment on Wednesday, at one of the best hospitals in the province, for an ultrasound and then a meeting with a genetics counselor.

I have an appointment on Thursday, at another of the best hospitals in the province, for an ultrasound and then a meeting with a maternal fetal medicine specialist.

A week after the anatomy scan, we have appointments with specialists, who will be among the best in the world, to help us get answers and help us chart our way forward in this pregnancy. We have not had to wait. And we will never see a bill.

(Incidentally, my situation also illustrates the major weakness in our system: lack of communication. Both hospitals have decided they want to do their own ultrasound rather than rely on the original anatomy scan and the radiologist’s report, which is fine. But it’s a touch ridiculous that they can’t communicate with each other to save the cost of at least one of these follow up scans. We need electronic medical files desperately but I have no idea if we will ever get there.)

This post is part of #MicroblogMondays. To read the inaugural post and find out how you can participate, click here.

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Filed under Anxiety Overload, Me? Pregnant?!, Medical issues, Microblog Mondays

Nothing is ever simple

“Why don’t you go and empty your bladder,” said the nice ultrasound tech at my anatomy scan yesterday. “I’ll take a few more pictures and then the doctor will pop in for a look.”

“Does the doctor usually come in to see the scans?” I asked.

“Oh yes, most of the time,” insisted the tech.

Well, maybe that line works on first time mothers, but I have had an anatomy scan before (admittedly not at that same location) and I know it is NOT AT ALL normal for the radiologist to come in and consult during the scan.

Nor is it normal to have the radiologist and the tech stare at the same part of your baby over and over again with identical puzzled/furrowed brows.

Nor is it normal to have the radiologist ask the tech “Is it right or left you were looking at?”

At this point, you can picture me quietly freaking the FUCK OUT while trying not to move while they scanned and scanned and scanned. I knew it wasn’t the brain because I could see the part of the baby they were focused on. I thought heart or lungs.

I was wrong.

I forgot that we are supposed to have two kidneys.

My baby apparently only has one.

On a scale of “one to panic”, this is a “hiccup in pregnancy” as the radiologist put it. It is not brain or heart or spine. Provided the existing kidney functions as it should, there is no reason to think this will affect this baby in any real way except possibly make him/her more likely to develop hypertension. It also gives us an ironclad reason to forbid contact sports (no hockey, no football, no rugby- I am not at all heartbroken by this).

I am ok, mostly because labmonkey crunched all the data for me yesterday afternoon and told me that there were red flags they should have seen in the ultrasound if the existing kidney was not developing properly (even though they don’t come fully online until after birth, they are busy during the pregnancy processing amniotic fluid). I spoke to my midwife again this morning and she went over the report in detail. With the exception of the likely absent kidney, everything else looked perfect. So it is probable the existing kidney will work just fine, and there is no evidence that the baby has developed abnormally anywhere else on that same side (which was also a possibility).

Next steps are to meet with a genetics counsellor to discuss potential outcomes and a follow up ultrasound in three weeks’ time to check again and see if they can see anything else. My midwife is also arranging a consult during pregnancy with a pediatric kidney specialist so we can line up the baby’s care for after birth and make sure we have everything streamlined. At some point we will bring E’s paediatrician into the mix as she will be coordinating the testing once I leave the midwives. One big advantage to living in a big city in Canada- I have world-class medical care a short hop away by transit and I don’t have to pay for it out of my own pocket.

Right now there is no sense I have to transfer out of my midwives’ care or plan for a c-section. I will need to give birth in a hospital, but I think I had just about decided against the birth centre on my own anyway, so that is no big loss.

I am angry that, once again, nothing in my life to do with babies is simple. But I have also been quietly fretting about the anatomy scan for weeks now. I had a gut feeling something was wrong. And I have had too many friends who have been told at that scan that their baby was going to die to feel anything but relief that if there is something wrong with this baby, it is something that could ultimately be entirely inconsequential.

I hate that I am on a scale of “things aren’t perfect but they could be worse”. I would like to just have a perfect report. I would like to be one of those oblivious pregnant women who treats the anatomy scan as a way to learn the sex and whose biggest concern is whether to reveal with blue or pink icing in the centre of the cake or hide balloons in a big box.

But that’s not me. And that’s not my life or my experience of pregnancy.

And today, despite all the upheaval and emotion of the last twenty-four hours, I am still pregnant and there is no real reason to think we can’t bring home a healthy baby in June.

I am going to hold on to that.

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Filed under Anxiety Overload, Me? Pregnant?!, Medical issues, Midwives