Showing posts with label The Treatment Diaries. Show all posts
Showing posts with label The Treatment Diaries. Show all posts

Thursday, September 18, 2025

World Childless Week, Day Four: Childless Health Care?

Day Four of  World Childless Week 2025 is all about "Childless Health Care?" From the website description: 

Have you sat in a gynae room surrounded by pregnant women? Have you woke up on a hospital ward surrounded by new mums? Has a fertility clinic ignored you as soon as you ran out of money for more treatment? Has a nurse made a joke that was insensitive, a doctor used terminology that hurt? 

Has the health system let you down and created MORE HEARTACHE than HEALING?

*** *** ***  

Overall, I was lucky to have had great care from my family doctor and ob-gyn (perhaps less so from the fertility clinic and RE...!) -- and, being Canadian, I've never had to deal with the matter of bills, being "in-network," etc.  (Fertility treatment, of course, was another matter entirely...!)  

But I know most of the above painful scenarios have applied to me, and I imagine any childless-not-by-choice woman will have encountered at least one or more (and possibly all) of these at some point. My one big exception on the list:  I was very lucky that I never woke up on a hospital ward surrounded by new mothers; I delivered my stillborn daughter at a big city hospital where they routinely handled these situations, and had a special wing with private rooms to deal with them. (One CNBC mother I know remembers spending her son's final moments in the privacy of what was essentially a broom closet. Seriously.) 

My room was, however, on the same floor as the maternity ward, in the same wing as rooms where parents could spend time with their dying babies, and directly across the hallway from the neonatal intensive care unit. We couldn't see inside, but we could hear the beeps of the monitors whenever the door opened.  

My most relevant posts on this subject will likely be found under the labels "1998 memories" and "The Treatment Diaries," although I'm sure there are many more. (I have a general label of "health," but it's pretty broad, and there are currently almost 300 posts in that category!) 

Check out today's content on the WCW site, including community members' contributions, and four free, live webinars related to this subject. They will be recorded and the links will be posted later on the Day Four page and WCW YouTube channel for anyone who cannot watch live.  

Monday, September 12, 2022

World Childless Week 2022, Day One: Our Stories

The sixth annual World Childless Week is here!  -- an entire week filled with inspiring and comforting things to read, watch, listen to and participate in, focused on a different topic/theme each day (and new material posted daily too). If you miss some of the live webinars, don't worry;  they are posted on the WCW website later in the day/week to be enjoyed and consulted indefinitely. (The past five years of amazing WCW content is also available onsite -- what a great resource!) 

As usual, I didn't manage to get my act together to write something new -- but I'm always happy to promote WCW -- and last year, it occurred to me that I've covered many of the topics in my blog over the almost (gulp) 15 years I've been writing here. So each day, I'll post about the day's topic here, with some links to some of my own writing on the subject (if I have written about it). (Some of the content I wrote last year for WCW may be repurposed for this year's posts.) 

Enjoy! :) 

*** *** *** 

Day One is focused on the theme "Our Stories" (as it was in the three previous years too).  

Whilst we all share the same grief of childlessness, we each have a different story to tell of how we arrived here: the struggles to conceive, the sadness of not meeting a partner, the tough choices that broke our hearts, the circumstances that prevented and blocked our chance to be a parent. The confusion of emotions that left us grieving, the feelings of being misunderstood that made us withdraw from the world. 

This is your opportunity to share your story. 

I'm a firm believer in the power of telling our stories (if only to each other, at least at first). Meetings of the pregnancy loss support group that dh & I used to facilitate would always begin by going around the room and having each person introduce themselves and tell us their story, what brought them to us. Sometimes (especially at first), the stories would be long, detailed and filled with tears. Over time, new details would emerge that we hadn't heard before. And we'd learn to develop a shortened "Reader's Digest" version of our story, which left more time for the longer stories (plus, over time, the "regulars" would all get to know each other and each others' stories pretty well, so it wasn't quite as necessary or important to go through all the details for the umpteenth time). 

Telling and retelling our stories to each other like this, week after week, in a supportive environment among others who had similar stories to tell, was good practice for handling those inevitable innocent questions and awkward encounters that all of us experience, sooner or later. In training sessions, we also learned that telling our stories, or some version of them -- over and over and over again -- helps us to process what happened. 

I think the same principles apply to our stories about our childlessness.  Our stories matter, because they're OURS, and because by telling them, we light the way for other childless women looking for support and comfort.  Our stories remind each other that we are not alone.  

This entire blog, of course, is my story :) (or at least parts of/a version of it) and it has evolved, along with my story, over the past 15 years.  A barebones, thumbnail version of my story can be found in the "About me" Blogger profile near the top of this page on the right-hand side (or in the link here). You can find a slightly longer version in the "About me" page (found just under the title/header of this blog). The "Timeline" page (link right beside the "About me" link) also gives you an idea of how my story unfolded and some of the significant dates & events. 

If you're really interested in all the gory details (and be forewarned, some of them ARE a bit gory, emotionally if not physically), I wrote a series of posts tagged "1998 memories" in which I relived my one doomed pregnancy, 10 years after the fact. I did the same thing with "The Treatment Diaries," all about our foray into infertility treatments, 10 years after we abandoned them and resigned ourselves to permanent childlessness. 

I also wrote a few posts shortly after I started this blog, where I told a condensed version of my story (up to that time): 

If you have some difficulty telling your story to others (and I know I have!) -- especially to parents who might not understand/appreciate the subtleties of involuntary childlessness -- take comfort in the words of Brene Brown -- who emphasizes the importance of telling our stories -- but also this:  

Our stories are not meant for everyone. Hearing them is a privilege, and we should always ask ourselves this before we share: "Who has earned the right to hear my story?" If we have one or two people in our lives who can sit with us and hold space for our shame stories, and love us for our strengths and struggles, we are incredibly lucky. If we have a friend, or small group of friends, or family who embraces our imperfections, vulnerabilities, and power, and fills us with a sense of belonging, we are incredibly lucky.

Check out today's content on the WCW site, including community members' contributions and a webinar that ran live earlier today: "Therapy as a Therapist," hosted by Stephanie Phillips, with Cristina Archetti, Katie Maynard, Jody Day and Meriel Whale. It was recorded and will be soon uploaded to the Day One page for anyone who missed it. 

Monday, September 13, 2021

World Childless Week, Day One: Our Stories

The fifth annual World Childless Week kicks off today!  and Day One is focused on the theme "Our Stories."  

No matter what anyone has said to you (including your own inner critic) your story is important. The dreams you had to become a parent: the struggles of trying to conceive, the sadness of not meeting a partner, the life choices and circumstances that restricted or denied your opportunities. The harsh reality of knowing you’d never be a parent; the anger, anguish, confusion and grief. 

These are the stories we need to share and yours are the words that need to be heard.

I'm a firm believer in the power of telling our stories (if only to each other, at least at first). Meetings of the pregnancy loss support group that dh & I used to facilitate would always begin by going around the room and having each person introduce themselves and tell us their story, what brought them to us. Sometimes (especially at first), the stories would be long, detailed and filled with tears. Over time, new details would emerge that we hadn't heard before. And we'd learn to develop a shortened "Reader's Digest" version of our story, which left more time for the longer stories (plus, over time, the "regulars" would all get to know each other and each others' stories pretty well, so it wasn't quite as necessary or important to go through all the details for the umpteenth time). 

Telling and retelling our stories to each other like this, week after week, in a supportive environment among others who had similar stories to tell, was good practice for handling those inevitable innocent questions and awkward encounters that all of us experience, sooner or later. In training sessions, we also learned that telling our stories, or some version of them -- over and over and over again -- helps us to process what happened. 

I think the same principles apply to our stories about our childlessness.  Our stories matter, because they're OURS, and because by telling them, we light the way for other childless women looking for support and comfort.  Our stories remind each other that we are not alone.  

This entire blog, of course, is my story :) (or at least parts of/a version of it) and it has evolved, along with my story, over the past 14 years.  A barebones, thumbnail version of my story can be found in the "About me" Blogger profile near the top of this page on the right-hand side (or in the link here). You can find a slightly longer version in the "About me" page (found just under the title/header of this blog). The "Timeline" page (link right beside the "About me" link) also gives you an idea of how my story unfolded and some of the significant dates & events. 

If you're really interested in all the gory details (and some of them ARE a bit gory, emotionally if not physically), I wrote a series of posts tagged "1998 memories" in which I relived my one doomed pregnancy, 10 years after the fact. I did the same thing with "The Treatment Diaries," all about our foray into infertility treatments, 10 years after we abandoned them and resigned ourselves to permanent childlessness. 

I also wrote a few posts shortly after I started this blog, where I told a condensed version of my story (up to that time): 

If you have some difficulty telling your story to others (and I know I have!) -- especially to parents who might not understand/appreciate the subtleties of involuntary childlessness -- take comfort in the words of Brene Brown -- who emphasizes the importance of telling our stories -- but also this:  

Our stories are not meant for everyone. Hearing them is a privilege, and we should always ask ourselves this before we share: "Who has earned the right to hear my story?" If we have one or two people in our lives who can sit with us and hold space for our shame stories, and love us for our strengths and struggles, we are incredibly lucky. If we have a friend, or small group of friends, or family who embraces our imperfections, vulnerabilities, and power, and fills us with a sense of belonging, we are incredibly lucky.

Check out today's content on the WCW site, including community members' contributions and two live webinars. The first, "Telling Our Stories: From Hurting to Healing" with childless therapists Sarah Roberts and Judy Graham, will likely have ended by the time most of you read this; but the second, "Releasing Our Grief Through the Power of Words," begins at 2 p.m. Eastern Time in North America.  Both webinars will be recorded and uploaded to the Day One page for anyone who cannot make the live event.

Wednesday, July 28, 2021

Caveat emptor...

A couple of recent stories about ALI-related scandals in the news that I thought I'd pass along -- as well as a story tangentially related to my own experiences...!  

*** *** *** 

During my short-lived pregnancy in 1998, my ob-gyn's office provided me with a pamphlet about banking my baby's cord blood (for a fee, of course...!). Cord blood contains stem cells that might be used years later to treat some medical conditions, including leukemia.  

I never got far along enough in my pregnancy to make a decision about banking her cord blood, but I thought about that when I saw a recent news story on CBC about a scandal involving the Cord Blood Bank of Canada (CBBC).  Clients of the CBBC allege in a lawsuit that the CBBC did not notify them after all the samples stored by the business were destroyed nearly three years ago, in October 2018 (!) ...and not only that, they continued to charge those clients the annual storage fee! 

The case is still before the courts. 

*** *** *** 

This story has been in the news here before (and there have been similar cases in other countries): an Ottawa fertility doctor (Norman Barwin) used the wrong sperm (including his own) in the conception of at least 100 children.  A class action lawsuit launched in 2016 has grown to 226 members, including former patients and children conceived through artificial insemination -- 17 of whom have discovered Barwin is their biological father through DNA.  

In a recent development, Barwin has agreed to a settlement of more than $13 million, which will include $75,000 to set up and operate a DNA database that will help donor-conceived children to identify their biological fathers and half-siblings. The doctor was stripped of his medical license and fined more than $10,000 in 2019. 

*** *** *** 

Thinking about these stories and about ethical lapses in fertility treatment had me thinking about a close call in my own pregnancy/loss/infertility journey.  I don't think I've ever told this story on my blog before:  my own RE was subjected to disciplinary action for professional misconduct by the College of Physicians and Surgeons of Ontario in 2006, five years after I left his practice (and treatment). In 2001 -- around the same time I left fertility treatment altogether --  he began an affair with his receptionist/office assistant (!). The affair ended, but after that, she became an anonymous egg donor in his practice, twice. Donors and recipients are not supposed to know each others' identities, but because of her position at the office, she had access to the recipients' files and claimed to know the identity of at least one of the recipients of her eggs. She left the practice in 2003.  

The RE admitted to the facts of the case. He was fined $2,500, received a three-month suspension of his license and was required to complete an ethics course.  

There's probably more to the story that hasn't been made public, but this is essentially what appears on the public record. The background story and the judgment appears in his CPSO listing (I have a PDF copy in my own files), and if you go WAY back on some Canadian infertility message boards, you'll find some chatter about the matter -- although the glowing reviews he continues to receive on some sites makes me suspect that few people have actually looked up his CPSO listing...! (I suppose some have, but are so desperate to have a baby that they are willing to overlook it...??)  

He did bring up the subject of using donor eggs with me a couple of times. I was never really interested -- and I shudder to think how close I might have come to getting mixed up in this situation...! 

*** *** *** 

A reminder that Pamela at Silent Sorority is a co-founder of the site ReproTech Truths, dedicated to countering the disproportionate emphasis on IVF success stories with untold stories that will help future generations understand the associated risks and costs of fertility treatment and make better, more informed decisions. They welcome your stories!  

Friday, October 2, 2020

Uterus update

Further to my post on Tuesday about my post-menopausal spotting issues:  

I called the clinic on Wednesday, and had a phone consultation with my family doctor yesterday afternoon (they're trying not to book office appointments right now unless it's absolutely necessary). I told him the spotting was dark brown, not red, and there was so little of it that I didn't even put on a pantyliner. Nor was I suffering cramps or any other overt pain. 

He agreed that was encouraging --BUT because I'm post-menopausal (eyeroll) we shouldn't ignore this, and so I'm going for an ultrasound next Thursday (the earliest they could book me). "It will be a transvaginal ultrasound," he warned me. I assured him that I went through fertility treatments, so that would NOT faze me! ;)  

Depending on the results of that (which he should have within two or three business days later), he will possibly refer me to a gynecologist for an endometrial biopsy. I had one with Dr. Ob-gyn (now retired) during my infertility workup, 20 years ago. I remember it wasn't fun, but it was also quickly done.

I did have two ultrasounds done four years ago -- one in April 2016 (ordered by Dr. Ob-gyn), because I'd been having some spotting & cramping between periods, and a follow-up in November, more for my peace of mind than anything else, he said. The April u/s detected a small area where the lining seemed slightly thicker, or possibly a small fibroid, but it was not clear enough to be conclusive. The November one didn't turn anything up. 

The first day I noticed the spotting was a week ago Thursday;  it showed up three more times over the next few days, including on Tuesday (when I posted here about it). Nothing Wednesday. Nothing yesterday... until just as I was getting ready for bed. (eyeroll) This time it was more like regular discharge, but tinged lighter brown.  

So I guess we'll see what happens... I'm not telling our families anything about this, unless it turns out there's something to tell. Why worry them unnecessarily? 

When I called the office on Wednesday about this, I also asked about our annual checkups. They won't be doing those until some time in the new year (!). I also asked about flu shots. Those are coming soon, and will be done by appointment. I will need to call them sometime next week or the week after that to book those. 

Any prayers/positive thoughts/vibes/similar experiences (hopefully ones that turned out well...!) appreciated. 

Tuesday, February 26, 2019

End of an era

In those first few awful weeks after I lost Katie, and especially once my parents left and dh went back to work, I spent a lot of time on the computer, searching endlessly for answers -- why had this happened to me? -- and reassurance that I wasn't the only one out there to have experienced this tragedy.  I found some message boards, but being relatively new online, I was a little leery about putting myself out there in such a public way (even under a pseudonym). (Blogs had yet to be invented, or at least popularized, and Facebook was still 7 years away from being launched.)

And then I found a website connected to a private email list for women (& men, although the vast majority of members were women) who had lost babies and were either trying again, or experiencing a subsequent pregnancy. It was called Subsequent Pregnancy After a Loss Support, SPALS for short.  I was accepted as a member, opted to receive digests instead of individual emails, and wrote my first post, introducing myself and telling my story.

And then watched as my inbox filled up with messages of welcome and sympathy.

I had found my tribe.

We started attending an in-person support group, once or twice a month, around the same time -- but that was a LONG time between meetings for a newly bereaved mom. SPALS filled the gaping hole in between "real life" meetings, and became my daily lifeline, especially in those early weeks & months. When I went back to work in October, fellow SPALSers were there with advice & support. They were there when we started trying to conceive again, and when we sought help, first from Dr. Ob-gyn and then Dr. RE.

It was customary for members to include their TM (Trying Mom -- pregnant moms signed themselves as PM, or Pregnant Mom) status as part of their signature... mine looked something like this:

Lori
(email address)
Mom to Kathleen Maria (Katie), s/b @ 26 wks LMP, Aug. 7/98.
TM cycle #xx

Below my signature, I added:

"Life is what happens while you're making other plans." -- John Lennon

eventually joined by

"We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us." -- Joseph Campbell

(Both quotes now appear in the sidebar of this blog.)

My final failed IUI (in June 2001, when I was 40) marked the end of cycle #27 since we started trying again after Katie's stillbirth. Skimming through my old emails to the list (I have saved almost every one of them! -- hundreds and hundreds of them, over the years), I found this one from September 8, 2001 (just a few days before the tragedies of September 11th):
Hi everyone, 
A SPALS friend recently commented to me that I'd been rather silent lately & asked whether I was still staying with the list, given that I've stopped infertility treatment.  So I thought it was time for a bit of an update on where my life is at. 
I guess one reason I've been quieter (though not completely silent -- I counted & I did post nine times in August!) is that I have not returned to the RE, so I don't have any day-by-day updates on treatment to report on anymore!  While I reserve the right to change my mind, I don't think I will be going back anytime soon, if ever. 
This doesn't mean we have given up ttc altogether -- but I know our chances are pretty slim.  I got one of the Clearplan Easy Fertility Monitors & started using it this cycle (now cycle #30!), but I have no great faith that it will work where 300 IUs (4 amps) nightly of GonalF & IUI didn't.  I'm just trying to looking at it as neat gadget I can have some fun with!  : ) & not obsess too much... 
While part of me feels guilty for "giving up" when I could have tried IVF, donor egg, a surrogate or what have you, I have reached the point where the physical, emotional & mental strain of treatment just got to be too much. I've come to realize that just because the option is there doesn't mean that you have to try it, or that it's personally right for you.  In a way, I think it was simpler 30 or 40 years ago, when you either had kids or you didn't, and didn't have all these choices to make  & dilemmas to weigh! 
Everyone has their own limit, & I think I reached mine, as evidenced by the anxiety attacks I had in June. I have not had any since then, thankfully, & while I sometimes get depressed knowing that, by giving up on treatment, we likely won't ever have a living child of our own, it feels good to be free of that particular source of stress in my life.  I have been hanging out on several "childfree living" forums on the Web & trying to focus on dh, projects around our home & the good things we have in our life together, instead of what I don't have & may never have. 
I still plan to stay with the group.  Regardless of whether I ever have a living child, I do have a daughter, even though she is not on this Earth, and this is one of the few places where I AM recognized as a mother.  What I have been through these past 3-4 years has shaped who I am today, & will always be a part of me.  SPALS has been a big part of my life.  Next week it will be three years since I joined, & I honestly don't know how I would have survived without all of you to lean on! 
So even though the "subsequent pregnancy" part of the equation has continued to elude me (& may never come to pass), I hope I can still be of some support to the rest of you. 
Besides, I can't leave now -- I still have to see all the oldtimers, like [names], through their SPALS pregnancies!  : )
Much love & hugs to all...
Despite what I wrote, I gradually (perhaps inevitably) drifted away from the list. I still kept updating the cycle number in my signature for another year or so, but once I hit cycle #40 (sometime in 2002), something in me broke, and I changed it to "too many cycles to count anymore!"  By mid-2004 (when I was 43), I stopped referring to my cycles completely.  

For a while, I continued to respond to posts when I thought I could offer my experience or advice. But my words felt less and less relevant as time went on, I got older, the newly arrived grieving members seemed to get younger, and the remaining oldtimers I knew delivered their subsequent "rainbow" baby... and then a second, and sometimes a third, or more.  

I only posted twice in 2005, once in 2006 (on Katie's birthday) & once in 2007.  I haven't posted there since then. And gradually, the digests landed in my inbox less and less frequently, until I was receiving just a few digests per year. Apparently most of the action eventually moved over to a Facebook group. I have remained in touch with a handful of former SPALSers over the years, mostly as Facebook friends. One of them (Julia, who lost a daughter the very same day as I lost mine) later became a blogger (although she's no longer active there).  

Still, I couldn't bring myself to unsubscribe. 

I got a new digest this morning, the first in several months, I think. As I scanned over its contents, I felt a pang of sadness -- and then a warm wave of nostalgia &  profound gratitude.

After 24 years, the longtime list administrator -- a bereaved dad who was one of the early members of the list himself -- is shutting the list down.  For many years, the listserv has been run from a private server donated by a(nother) bereaved dad who benefited from the list. He can no longer offer us the server, and while it would be theoretically possible to move the list elsewhere, it has been effectively dormant for several years now, and new members have not been admitted for some time.

And so the list where I first found solace online as a newly bereaved mom, 20+ years ago -- and where thousands of other bereaved parents from all over the world have found a safe haven over the years -- is ceasing operations. Several members have responded to the admin's post announcing the end of the list with final posts of thanks. I sent one of my own this afternoon. I also removed the site from my list of resources on this blog.

Thank you, SPALS. I will always treasure the years I was a member, and be grateful for the support I found there.

Wednesday, June 29, 2011

The Treatment Diaries: 10 years later

So endeth The Treatment Diaries. When I first kicked off this project back in May, several of you wanted to know how going back in time like this made me feel, and how my perspective has changed over 10 years.

It wasn't easy to take this particular trip down memory lane. In some respects, my "1998 memories" series of posts (about my pregnancy with Katie & her stillbirth) was easier to relive. It was stressful writing about that stressful time in my life too -- but there is a part of me that loves to write/talk about my pregnancy & my daughter. She is still (& always will be) a part of my life and, on a certain level, it brings me a wistful pleasure to think about her, even if her story is ultimately a sad one. There's no real pleasure in reliving the details of my failed fertility treatments (except maybe the fact that I survived & am still here to tell the tale). Writing about the onset of anxiety, I could feel the tension in my body rising all over again, even though it all happened 10 years ago.

There were so many little details that I had forgotten, or hadn't thought about in years. When I look back now at all the little daily ups & downs, the 4 a.m. wakeup calls (5 a.m. on weekends!) to get to the clinic in time to join the lineup for ultrasounds, all the running around from train staion to ultrasound clinic to RE's office, and then the mad dash to MY office to put in a full day of work (sneaking in the side door & hoping my tardiness wouldn't be noticed)... I get exhausted just reading about it. How did we do it? And we only did it for a handful of IUI cycles over 1-1.5 years. How do other people do it for so many more cycles, of IVF, even, over many years??

I also found myself getting annoyed with Dr. RE all over again -- how he'd be hot about our prospects at one visit, cold the next. I realize the doctors aren't gods and they just call it like they see it from one visit to the next (and don't always read their own files or remember what they've told you at previous visits) -- but a little more consistency would have been appreciated.

As I read through the ups & downs (many, many downs) of each cycle, I found myself thinking that, really, the writing really was on the wall, almost from the very beginning, if we'd cared to see it. But we didn't. We (at least I -- dh was always a little more skeptical) didn't WANT to see it, at least not until I was forced to -- blinded by hope (& desperation) as I was. I'm really highly doubtful that IVF, in addition to the treatments we did, or instead of them, would have ultimately led to a different outcome. It confirms my belief that we did the right thing in getting off the merry-go-round when we did.

I'm not sorry we tried, even though the odds were stacked against us -- we gave it a good shot. And I'm not sorry that I've written about now at this level of detail, or revisited this time in my life at the 10-years-later mark. If you don't look back now & then, you sometimes forget just how far you've come.

But I'm glad it's all over and I don't have to do it all again. Once is definitely enough.

Tuesday, June 28, 2011

The Treatment Diaries: Aftermath & anxiety, June-July 2001

Monday, June 4, 2001: Negative, of course. :( What's more, my ultrasound showed a few large echogenic follicles. "He wants you to come back in a few weeks (Monday, June 18th) to monitor those large follicles and make sure they're going down," office manager K. said in a phone call to me later in the day. By late that afternoon, I was bleeding heavily -- the heaviest cycle I'd had in a few years. In 8 hours, I soaked through five maxipads, and was leaving large clots in the toilet.

I paged Dr. RE: "Is this normal??"

"I wouldn't say it's completely normal, but it's not unexpected," Dr. RE said when he called me back awhile later. "Your estrogen levels were very high, and your lining was quite thick." He told me I could take ibuprofen. He started talking about things we could do "the next time," but I told him we would probably be taking a break for awhile. (Maybe permanently.)

Tuesday, June 5th happened to be my annual physical with my family dr. I was 10 lbs heavier than I had been the previous year. :p

Later that night, I called my mother. She chose that evening, of all nights, to tell me about someone she knew who had adopted two children through the same agency two of my girlfriends had used. And now they had just gotten a third child, after a wait of just three weeks! "I just thought I'd mention it," she said brightly. "Your sister told me to leave you alone, but we DID sort of talk about adoption once, didn't we?"

My replies were monosyllabic. When I finally got off the phone, I burst into sobs & cried for more than an hour. My sister was right -- I knew my mother meant well -- she wanted grandchildren, and she had no idea the lengths we were going to, trying to get her at least one. But geez Mom, what rotten timing!! Dh was furious -- with my mother, for bringing it up, and with me, for not telling her what was going on. That didn't help matters.

The next morning, Wednesday, June 6th, I wrote in my diary:
I look like a mess -- woke up this morning, eyes sunken with huge bags underneath. I feel lousy, like I was hit by a truck. Eyes feel sunken (could hardly put in contacts), hard to even walk (a little short of breath?). I am so out of shape it's not funny (although I suspect some of this is psychological -- also compounded by general end of cycle/period fatigue).

My life is a mess. Dh is right -- we need a break from all this.

I didn't take my temps this morning.
Friday, June 8th:
I have been winded all week. Today, I noticed my ankles are swollen. Weight is up slightly, but it's evening, & I usually weigh myself in the morning. Health encyclopedia says symptoms of pulmonary edema/congestive heart failure. OHSS?? OH. GOD.

You can see I was beginning to work myself into quite a state. I called Dr. RE (again). He pointed out that OHSS symptoms usually show up within a week to 10 days after an IUI, and it had been almost three weeks now. "I would be very surprised if it showed up this late, unrelated to other symptoms." He pointed out that the weather had changed, that the body tended to retain fluids in hot weather. Also, I had just had a very heavy period, and my body might be trying to compensate by retaining fluids.

Then he added, "I guess we could have pushed you a little too hard with the drugs, so your kidneys & heart aren't working very well." Exactly the WRONG thing to say to a hypochondriac who had kidney & bladder problems as a child (and one kidney slightly smaller than the other) and a diagnosed heart murmur (albeit a very minor one).

I mentioned I had been to my family dr for a checkup. The blood results weren't back yet, but my EKG had been normal. "If there was anything abnormal, I'm sure he would have picked it up," Dr. RE said, but then reiterated, "You may have underlying problems that have been exacerbated by the drugs... you should get that assessed. You might be unique." Oh, I'm friggin' unique, all right... :p

He wound up by saying, "Don't be frightened... but don't dismiss things either. If you're really concerned, get to the nearest hospital. And call me, so the drs there get the full picture."

My next few journal entries obsess over the daily state of my ankles. :p They looked better, but I still wasn't sleeping very well.

Sunday, June 10th was our pg loss support group's annual picnic and butterfly release. It was a highly emotional day.

Monday, June 11th, I got up at 4 a.m. & got ready to take the early train into the city. Then I remembered -- I wasn't due back at the clinic until NEXT Monday, June 18th. I decided to take the early train anyway & head straight for the office.

I had a lunch date at a restaurant downstairs in my office tower with my college roommate -- she'd had a birthday recently & it was my treat. All morning long, I'd felt a certain tightness & discomfort in my chest. My bra felt tight, & before I went to meet her, I went into the washroom, took it off & stuffed it into my purse.

In my journal, I wrote (and I have no idea why I was writing in present tense...!):

As I settle into my seat, I think, "This is a mistake." But I chat, I laugh, I eat -- lightly -- tomato basil soup, salad, roll and Perrier. I do have a good time -- for awhile.

About the time the tea comes (1 p.m.-ish), I start feeling really funny. I nod and laugh, but I'm no longer listening. My chest is feeling tighter, my shoulders feel sore, I start to feel warm from the chest up, but my hands feel cold & clammy & weak. I reach for the leather folder to slip in my money, but I have to try three times before it opens. I try to take a sip of water, but I can't lift the glass.

"I'm not feeling very well," I tell my friend. I try to take a deep breath, but it's hard. She asks if I feel sick, asks me questions. Tears fill my eyes. "It's scary," I whisper.

She asks if I'd like to call my dr. on her cellphone. She tries to dial, but the phone doesn't work inside the restaurant. Somehow, I find the strength to rise slowly and leave. We go sit on a bench in the concourse outside. I call Dr. RE & the receptionist answers. I tell her I'm not feeling very well. She gets K. on the line and I tearfully tell her how I'm feeling. She asks me questions. Nausea? (No.) Bleeding? (No.) Cramps? (No.) She asks me to call back in five minutes.

When I do, I'm still not feeling great. Maybe I'm having a panic attack? I suggest. "Could be," she says. It's too far past the profasi shot for it to be OHSS, she says, "but you should get checked out at your family dr's or the emergency room." Gee, thanks. :p

I call dh & tell him what's going on & where I am. Decide not to call Family Dr., just go there. I call my boss & leave a message, saying I'm not feeling well and am going to my dr's. We slowly make our way to the escalator. Outside, there's a cab waiting -- thank God! I hug my roomie and thank her. She offers me her cellphone but I decline...

Not sure which is scarier, the way I'm feeling or the way the cabbie is driving. I feel like I'm going to pass out. I struggle to remain calm and take deep breaths. Dh squeezes my hand reassuringly and smile. I am so proud of him.

We pull up in front of the dr's office. Dh pays the cabbie and we go in. There's a delivery guy with the receptionist and the nurse (who is also the dr's wife), but no one in the waiting room.

"I'm sorry I didn't call," I sob, "but I'm not feeling very well." Within seconds, I'm led into an empty room and told to lie down. Dh uses my cardigan to make me a pillow. The nurse slaps a blood pressure cuff on me and pumps it up. She shakes her head -- it's high. She asks me how I feel -- chest pain? (Tightness, no pain.) Nausea? (No.) Headache? (No.) etc. etc.

I tell her about the fertility treatments, about Friday. I had actually called there just before lunch about my bloodwork. My thyroid was high (6.64, normal is 0.5-5.5), & hemoglobin a tad low (116 -- should be 120-160) but everything else, including my ECG, was fine.

The nurse takes my blood pressure again (and again). Still high, but falling each time, until it reaches a high normal range of 130/90.

The dr finally comes in. Same conversation as with the nurse. He listens to my chest & lungs and pronounces them fine. To ease my mind, he does another ECG. It's fine.... He also takes some blood to test for cardiac enzymes (it comes back the next day negative). He tells me it looks like a panic attack to him.

He leaves briefly and comes back with a little bottle. He shakes out a tiny white pill and offers it to me. "What is it?" I ask. He tells me it's anti-anxiety medication & will help calm me down. (He later tells me it's the receptionist's!) He writes me a prescription for the same thing, "just in case," only a lower dose.

I'm finally calming down. They send us on our way feeling better (the drugs are working!).

We go to a nearby drugstore to fill the prescription. Stop at a payphone to call people. Dh calls his partner at work, I call my best friend at work and then my boss, then my roomie (voice mail), then Dr RE's office (talk to K.). We take the subway to the train station & take the next train home (by now, it's almost our usual time to leave anyway). I lay on the couch most of the evening & go to bed at 8:30. I sleep soundly for the first time in ages. Dh stays awake until 2 a.m., listening to me breathe!!


Over the next few days & weeks, I experience what I think of as "aftershocks." The next day I was attending a training workshop out of the office. All was going well until about 3:30 p.m., when I got what I described in my journal as "a funny cold feeling... a little tingle/numb feeling going up the right side of my face that started to turn warm. Great, now I'm having a stroke??" I struggled through the rest of the session, wound up taking another pill and going to bed early again.

Wednesday, June 13th, I called the infertility counsellor we had visited prior to embarking on injectables & IUIs. She remembered me instantly, and we set up an appointment to meet Monday after work. The next day, I returned to Family Dr's for a followup blood test for my thyroid. "Well, you're looking MUCH better!" they all told me. He checked my blood pressure and listened to my heart while I was there, and all was well.

Eight years earlier, Family Dr had thought he detected a mild heart murmur. He sent me to consult a cardiologist, who ordered an echocardiogram. At that time, he said he saw absolutely nothing that concerned him -- on a scale of 1 to 6, my murmur ranked at about 0.5 -- but he added I might want to repeat the test in another 10 years just to check things out. Family Dr asked if a repeat echocardiogram would make me feel better, and I said yes, so he booked one for me. "I don't want to dismiss your concerns," he said, "but this sort of thing is almost always emotionally based and you've been under a lot of stress lately."

Monday, June 18th, I was back at Dr. RE's for ultrasound & bloodwork. The echogenic follicles were still there, but they weren't as big.

Later that evening, we met with the infertility counsellor again & told her everything that had happened since we last saw her. We acknowledged that we had said "three cycles" -- and we'd done three cycles. Were we ready to stop treatment? To stop ttc altogether?

Dh said he was ready -- he felt we had done all we could, and he was worried about my health, the stress on both of us, the possibility of multiples. He said we could continue to try on our own for awhile, but acknowledged he wasn't getting any younger.

I said I was 85-90% of the way there. "I know we could do more -- more IUIs, IVF -- but emotionally, physically, mentally, I'm not sure I can do it anymore. I said I still wanted to keep the door open crack. And I said I needed a holiday!!

The counsellor recommended that we take a break -- put away the thermometer. think about the surgery. "If you're going to do one more cycle, set a time limit, say, your 41st birthday in January." She recommended that, once we decided we were ready to stop, we should consider birth control (!!). "I know it sounds nutty," she acknowledged, "but then you won't be constantly hoping in the back of your mind." She also recommended performing some kind of ritual to acknowledge & mourn the end of this phase of our lives.

She also asked us, "What would it mean to give up on that dream?"

In my journal, I summarized my response: "I know in my heart we can have a good life with just the two of us. But I will always feel like I missed out on something special."

She asked us what we did for fun, to relax. I said, "You know what? I had fun tonight! We stayed downtown, had dinner, wandered around a bit until it was time for our appointment. Usually we just head for the train, go home and flop on the couch in front of the TV set."

"You had a DATE!" the counsellor grinned. "I'm going to prescribe a regular date night for you two. You should take turns planning it. Something different, not the same thing all the time."

[I loved date night. Dh was less enthusiastic. He confessed he was usually too tired at the end of the day & wanted to just go home & flop on that couch. So it didn't last long, but it was fun while it did, and it helped get us over that initial post-treatment hump.]

Besides a date night, she recommended yoga for stress relief. I did eventually start taking a weekly yoga class, which I loved. I also started getting regular mini-massages at a walk-in storefront massage clinic near work, on my lunch hour. "You're very tight," one of the girls there remarked as she worked on me.

Monday, June 23rd, day 23, I was back at the clinic. K. called me later in the day. "Looks like you're starting to surge," she said, advising timed intercourse -- every two days for the next week.

I returned Tuesday, July 3rd (day 31) I was back for bloodwork. K. called me later to say my beta was negative, and my results suggested I was having an anovulatory cycle.

I returned a week later on July 10th (day 38), My homone levels were still fluctuating wildly, & I was offered Provera to induce my period. I was almost ready to go on vacation. What would happen if I didn't take the Provera? K said there was no medical risk; it was just a way to end a "really long" cycle & wipe the slate clean. 38 days was not that unusually long for me, so I said I'd prefer to wait things out.

"Call us when you get back," K. said. "And have a good vacation."

I never returned.

Monday, June 27, 2011

The Treatment Diaries: IUI #3, May-June 2001

We embarked on our third IUI cycle -- my 27th cycle since losing Katie,and the final IUI cycle we had agreed to do -- on Friday, May 4, 2001. On Sunday (day 3), we were back downtown for the usual ultrasound & bloodwork.

Ultrasounds were now being done again at the clinic where we had first gone when we started treatment. However, since Dr. RE had moved his office in the meantime, this meant that clinic days now went something like this: (1) arrive at the train station & take the subway three stops, walk the short distance to the building where the ultrasound clinic was & get my u/s done. (2) Hop back on the subway & travel another three subway stops to Dr. RE's office for bloodwork, drugs, etc. (3) Hop back on the subway & ride 7 stops to the office. More subway tokens, more running around, more time. :p On weekends, we would generally go to Dr. RE's office first, then for the ultrasound.

Because it was Sunday, we decided to drive downtown instead of taking the train & subway. Perhaps not the wisest choice, since many of the downtown streets were blocked, either for a charity run/walk, or with construction (which made dh REALLY happy...!). Dr's office came first: then off to the u/s clinic. When we got there, the usual entrance was closed. We walked around to the other side of the building & had to be escorted in by the security guard. The clinic was already open and there were six people ahead of me in line.

Later that afternoon, Dr. RE called, said my baseline results looked good, & I could either (a) start taking Clomid & return to the clinic on day 7 for monitoring, or (b) skip the Clomid & go straight to the Gonal-F. I told him I didn't HAVE any Gonal-F; the girls at his office had only provided me with Clomid. So, Clomid it was (my 6th cycle using Clomid). He said I really should start straight with the injectables, though, that the Clomid really wasn't boosting my results that much and he acknowledged the side effects were nasty. He also said he wanted to do an ultrasound himself to determine whether my uterus was a true bicornuate uterus, or just a septum. He said he would have one of the girls at the office call to set this up.

I asked him about the Gonal-F dosage this time around. The possibility of OHSS the last cycle had scared the crap out of me, & dh too. He said we'd wait & see the day 7 results -- he didn't think he'd lower the dosage, but didn't think it would be necessary to increase it either. He did actually increase it, to 4 amps or 300 IUs nightly.

Thursday, May 10th (day 7): I'd been having all-day, dull headaches and eye strain the past several days, no doubt a side effect of the Clomid. I went to the office in the morning for bloodwork, left work slightly early that afternoon & returned to the office, where Dr. RE performed an ultrasound. While he wasn't able to see anything on my left side, he was flabbergasted to find that I already had 12 -- 12!! -- follicles on the right side. They were small, but they were there. "I didn't expect to see that," he said.

As for my uterus, he said there were definitely two horns there -- but the tissue in between looked fibrous & could probably be removed. He estimated that I had a 70% chance of pregnancy loss because of my uterus, and said this likely contributed to Katie's stilbirth. While there were no guarantees, of course, he felt that surgery could help improve those odds. "Your odds are already low -- your age, and you don't ovulate well," he pointed out (gee, thanks...). He explained what the surgery would involve, and said we would have to postpone ttc for several months while my uterus healed. When you're over 40, of course, every month counts, & the thought of having surgery and then losing more precious months in recovery time was not a happy prospect for me.

I left with my head swimming around 5:45, & raced to the train station to meet dh. He was in a bad mood already after a long day at work, and as I told him about what Dr. RE had said about the surgery, he snapped, "What's the point?" I was a little ticked myself that Dr. RE had waited this long to figure this out & dangle the carrot of surgery in front us. Shouldn't he have checked it out & recommended it right up front before we'd started treatment?? I felt we should get a second (Dr. Ob-gyn?) & possibly third opinion before going ahead with surgery. And of course, first, we needed to get this cycle over with.

I noted in my journal that I was feeling LOUSY -- stressed, flushed on my face & neck (even Dr. RE had noticed) and a constant headache. I was exhausted. But that night, before going to bed, I injected myself with the first three amps of Gonal-F. I woke up the next morning feeling much better.

Sunday, May 13th was Mother's Day. :(

Monday, May 14th (day 11) was a clinic day. K. called me that afternoon & told me to come back Friday; however, I only had enough Gonal-F to last me until Thursday, so I spent my lunch hour making a hasty round trip to & from Dr. RE's office to get more drugs. By Wednesday, I was beginning to feel uncomfortably bloated. My Friday visit showed some follicles developing, but not as many or as big as might have been expected.

I went back in for more u/s & bloodwork on Saturday. I was told that now Dr. RE wanted to see the film of my HSG from November 1999. I had to request a copy and spend another lunch hour that week trekking up to the hospital to retrieve the CD, take it up to Dr. RE's office & return to work.

"I just don't get it," Dr. RE said later Saturday afternoon when I spoke to him on the phone. "Your E2 levels are astounding -- 8700 -- I've never seen them so high. Yet there's only one or two follicles that I would call mature. There's a disconnect there. I don't understand where all the E2 is coming from. It's not very encouraging that your response is so unpredictable... You are a bit of a challenge and a mystery." Oh, just lovely.

I asked him whether such high E2 levels posed any risks. He mentioned OHSS again & then threw out another thing to worry about -- blood clots. But he, added, "your levels are high, and high for you, but not exceedingly so."

Monday, May 21st (day 18) was our Victoria Day holiday -- but it was no holiday for us. :p We were up at 5:30, at Dr. RE's for bloodwork by 7:30 and the ultrasound clinic at 8, where (once again) the tech had difficulty seeing my left ovary. Nevertheless, I now had at least three good-sized follicles (although Dr. RE said my E2 levels suggested I should have 13 or 14?!). "We could push you for another day & do IVF, although I don't know how good the quality of the eggs would be," he said. (Nevermind that we didn't want to do IVF -- unless he was willing to do it for the cost of an IUI cycle!)

We agreed: Profasi shot tonight, sample around 8:30 & IUI around 10:30 on Wednesday morning.

Wednesday, May 23rd (day 20) was my third (& final) IUI. We arrived at Dr. RE's office at 7:30 a.m., where dh produced his sample -- went to work (!) -- & then returned for the IUI at 9:30. I was feeling rather crampy, before & after, but barely felt a thing during the IUI itself. Dh's count this time was lower than the two previous IUIs, just under 8.2 million. "It's been a strange cycle -- I really can't give you the odds," Dr. RE said.

En route out, we received our bill:

10 Clomid pills = $62.40
44 amps of Gonal F = just under $3,000
1 Profasi shot = $65
Sperm wash = $350

Total for this cycle: just under $3,500

Later that afternoon, I was feeling extremely bloated & uncomfortable, & called the office. "You could be ovulating," K., the office manager said. She told me I could take a couple of Tylenol, but added I should weigh myself daily for the next few days and watch for anything unusual. A friend at work, who was also going through infertility treatments, said her RE had told her to drink Gatorade or Powerade, so I found a bottle at the newsstand downstairs & sipped on that. I found it very difficult to get comfortable in bed that night, and had an extremely restless sleep.

The next morning, I felt much less bloated, but I felt sore all over -- under my ribs and shoulder blades, through my back & shoulders -- "like I was hit by a truck," I wrote. I decided to call in sick, using the excuse that I'd had an upset stomach all night long. By Friday, I was feeling slightly better.

Saturday, May 26th, I was back at the office at 8 a.m. for bloodwork. Sunday (day 24), I felt crampy all day. Around 8:30 p.m., I noticed I was spotting. I immediately paged Dr. RE & he called me back within 20 minutes. He agreed with me that it was awfully early for my period, but added, "It may not be a bad thing -- it could be implantation spotting... It's unlikely to be anythign serious, so long as you're not bleeding or cramping heavily." To be on the safe side, he suggested I come into the office the next morning to have my bloodwork checked. In my journal, in capital letters, I wrote, "I AM TERRIFIED!"

Monday's bloodwork showed nothing amiss and although I was still feeling crampy, I was not spotting. I was told to come back the following Tuesday for my beta.

Friday, June 1st (cd #29, 9 days past IUI) I woke up at 4 a.m. to go to the bathroom. I felt woozy and nauseous, and staggered back to bed. I woke up an hour later & took my temperature. It had dropped almost four degrees.

Every time I opened my eyes, the room started to spin around me. Eventually, I threw up. Twice. I did start feeling a little less nauseous after that. Even though my temps had dropped, I felt deliriously happy (emphasis on the delirious, I think...!). I must be pregnant!! Why else I would I feel so crappy?? (In recent years, thinking about my symptoms, I have wondered: did I have some kind of a mini-stroke?? Was it some weird hormonal thing going on? Or was it a manifestation of the stress and anxiety I was feeling?) Dh fed me crackers & water and even made a trip to the nearby 24 hour supermarket to get me some apple juice.

I had already missed a lot of work recently. I didn't want to call in sick, so I called my boss & left a message saying we'd had a late start & would be in later. (I told you I was delirious...) I decided not to call Dr. RE, because I knew he would tell me to come into the office later that morning or the next, and I just didn't think I could haul myself in to work AND up to his office feeling the way I did.

Somehow, by shortly after 7, I managed to drag myself out of bed and into the shower. Thankfully, it was casual Friday at work. I put on a pair of drawstring capris and one of dh's polo shirts but didn't put in my contacts or apply any makeup. We made the 9 a.m. train into the city, and I arrived at the office around 10 a.m. By the end of the day, I was exhausted, albeit tired & with a dull headache.

Saturday morning, I felt much better.
Later that night, though, I started spotting again. It continued the next morning, and by the afternoon, it was in full flow.
I called the office and was told to come in the next morning for bloodwork & ultrasound.
I crawled into bed that night, turned out the lights, & proceeded to bawl my eyes out.

Sunday, June 26, 2011

The Treatment Diaries: IUI #2: February - March 2001

Sunday, Feb. 18th (day 3): the usual day 3 ultrasound & bloodwork routine. I was the first i line, with only a few others coming in after me. "Different tech -- brutal!!" I noted about my ultrasound. Also noted: the technician told me I had an echogenic or hemorragic cyst on the left side, and two small fibroids on the right.

At Dr. RE's office, I had to once again search out his lab technician and tell her I needed my bloodwork taken. She always seemed far more interested in puttering around the lab than attending to the patients -- I was not impressed. She left me a message later in the afternoon to tell me to start my clomid and return for bloodwork & ultrasound on day 7.

I left a return message asking to speak to Dr. RE. When he called me back, I asked him about the cyst and the fibroids. He said the cyst was evidence that I had ovulated, but said it was small enough and my hormone levels were low enough that it shouldn't have any impact on this cycle. Likewise, he said the fibroids were small and shouldn't make a difference.

Thursday, Feb. 22nd (day 7), there was a bag of Gonal-F waiting for me at Dr. RE's office. I was told it was essentially the same thing as the Puregon I'd used the last time, and was instructed to use three amps (225 IUs). In my journal, I noted that the Gonal-F dissolved better than the Puregon, and didn't hurt as much when I injected myself, although there was more bleeding from the injection site. Over the next few days, I noted the usual side effects of fatigue, dry mouth and hot flashes.

Sunday, Feb. 25th (day 10), back at the clinic. Dr. RE called later to say my numbers were definitely looking better than they had the previous cycle.

Wed., Feb. 28th (day 13) was another clinic day. Dh & I had booked off work to attend an RTS training session for our support group. Instead of taking the train, we drove downtown, & then drove out to our training session. I noted feeling bloated and sore.

Friday, March 2nd: My journal notes indicate the technician was having great difficulty getting accurate measurements. "It's very hard to see... there are gas clouds (?!) obscuring the view... the most difficult I've ever done (SIGH)," I quoted her as saying. :(

I spoke with Dr. RE later, and he was probably the most upbeat I'd ever heard: my E2 levels were almost 7300, more than double what they had been at this point in my previous injectable cycle. "This looks very good!" he said. I was to administer my hcg shot (Profasi) that night, and return to the clinic on Sunday, no earlier than 10 a.m. (he had another IUI at 9;30).

Sunday, March 4th, day 17: Feeling distinctly uncomfortable. Dh elected to give his sample at he clinic again. The waiting room was quite busy, especially for a Sunday. "U/s clinic closed??" I noted in my journal.

Dr. RE greeted us by saying, "Very good" but then undercut the optimism by adding, "but it took you a lot to get here." Dh's sample was better than last time: 12 million, with 86% motility.

He said he was slightly concerned that I looked "puffy," and instructed me to weigh myself every day. If I noticed I was gaining weight, I was to call him immediately: I could be overstimulated and retaining fluid, which could be dangerous. (Great....) I went home & devoured all the information I could find on OHSS and its symptoms.

The bill for this cycle included just over $1,900 in drugs, plus $350 for the sperm wash = about $2300 again.

By the next day, I noted I was feeling MUCH better physically (less bloated), although I was also finding it difficult to sleep ("worrying about multiples!" I wrote). As the week wore on, I began feeling crampy. I returned to the clinic for bloodwork on Monday, March 12th, and was told to come back in a week's time for more bloodwork (i.e., a pregnancy test).

I didn't make it that far. Wednesday, March 14th -- cd #27 or 10 days past IUI -- I started spotting, and the following day, my period arrived. Friday, I went to the clinic for bloodwork. As I already knew, it was negative.

I no longer remember why, but we had decided not to start a new cycle immediately.

Monday, April 9th (day 26), I went back to Dr. Ob-gyn. I made some notes to discuss with him: no sign of ovulation yet. Possible yeast infection? (Took antibiotics prior to dentist visit on March 21st.) Dr. Ob-gyn said he saw no changes from the last visit (and the lab results came back clear), and to return in 6 months.

Monday, April 17th (day 33) I called Dr. RE's office: my temps were still low and according to the many OPKs I'd been using, I still hadn't ovulated. The same thing had happened after the last IUI cycle I had done with injectables -- that cycle had lasted an interminable 58 days! -- and I had wound up taking Provera to induce a period. I was told to come in for bloodwork, and it was decided that I was having an anovulatory cycle. "Wait a couple of days, and if nothing happens, you may want to take provera again," I was told.

Friday, April 20th, my temps rose slightly. Monday, they jumped higher. I decided to wait things out. Thursday, May 3, I began spotting and Friday, May 4th, my period finally began (on day 51!).

Saturday, June 25, 2011

The Treatment Diaries: The Clomid Capers continue, and the Big 4-0, December 2000 - February 2001

New year, new cycle. My period arrived on Jan. 7th, 2001. Jan. 9th found me back at the clinic for day 3 ultrasound & bloodwork.

As I wrote previously, as of Dec. 1st, Dr. RE had moved to new digs, another three subway stops further north of his previous quarters. He had switched ultrasound providers too, making arrangements with a facility a short walk away from his office. The building was very old and change room cubicles quite tiny. On the bright side, there were chairs in the waiting area where we could wait for our ultrasounds, instead of standing in line. The technician was very friendly and talkative but, as the other girls noted, very slow.

Dr. RE wasn't in, but the office manager provided me with Clomid, Puregon and some syringes, and told me to wait for instructions later that afternoon, after my bloodwork results had come in. The instructions were to start the Clomid, and then return on Saturday (day 7).

This time (my fourth cycle using Clomid, alone or in combination with injectables), I noticed some definite side effects: dry mouth & light sensitivity (especially in the morning), sore breasts, a jittery feeling, and extreme fatigue. But I felt better on Friday, January 12th -- a good thing, since it was my 40th birthday! I wasn't especially happy about being 40 and childless, but since there wasn't much I could do about it, I decided I might as well use the day as an excuse to enjoy myself. ; ) I took the day off work & spent the day getting pampered at the spa -- facial, massage, manicure & pedicure, including lunch. I loved it! Dh & I went out for dinner later that night.

The next day, Saturday the 13th, I got up at 5, and took the 7 a.m. train into the city. Dh didn't come with me this time, although I don't remember why, but I had company -- Cousin/Neighbour's neighbour, whom we saw occasionally, both at Cousin/Neighbour's house & on the train from time to time. I told him I had an appointment in the city, and thankfully, he didn't probe. I went to the clinic for bloodwork first, and then for my ultrasound. I wound up waiting an HOUR before I saw the technician. There was a lot of grumbling in the waiting room.

Also in the waiting room, one of the girls was chatting to another, & handed over her business card. I couldn't help but see the logo on it: it turned out she worked for the same company I did, in the same downtown location, in fact. We also exchanged business cards & had coffee together once to chat, but I rarely saw her after that.

I had about five small follicles on each side, each under about 5 mm. By about 10 a.m., I was back on the train, and home again around 11.

Later that afternoon, I had a message from Dr. RE. He bluntly told me this cycle wasn't looking very promising, and that the clomid had obviously not had a significant impact. My E2 levels were essentially the same as they had been on day 3, when he expected it to be up at least 100%. "I can't tell you how successful this cycle will be," he said, according to my journal notes. "If you want to go ahead with the injectables, I would have to increase your dosage substantially, to 300 or 400 IUs. Those are very high doses... You may choose not to go ahead this month, and discuss further treatment." He ended by asking me to have him paged.

When I finally got hold of him, Dr. RE went over the numbers with me again. "Your response was much poorer than I would have expected from a woman your age, given the dosage," he said. He told me I had two options: (1) forget this cycle (beyond the clomid I had already taken) and wait for a better one to try the Puregon again. "We can still monitor you, if you like," he said, "but I'd be very surprised if this cycle took off." This, he said, was his recommendation.

Or, (2) go ahead with the Puregon, but instead of the 200 IUs he was going to recommend, push my ovaries with 300 or 400 IUs daily. "If you don't respond to that, you really should consider your options," he said. "At some point, we have to talk long-term plans -- including, maybe, stopping." I reminded him that we had agreed to three IUI cycles using injectables.

The last cycle, he said, "was adequate -- but I want more than adequate." (What?? Hadn't he said at the IUI that it had turned out to be a good cycle after all??)

I agreed that, since the prognosis was not good, we should save our money for a better cycle, but continue to be monitored. He told me to come in next Friday to see what was happening.

*** *** ***

With this as a backdrop, I moved on to my next immediate challenge (wait for it...!): surviving a baby shower. My FIRST baby shower since Katie's stillbirth, more than two years ago now.

Back on Dec. 1st, on something like day 52 of my neverending cycle, we had arrived home, I opened the mailbox, and pulled out a small square envelope. Without even looking at the return address, I said to dh (a la Johnny Carson's Karnac the Magnificent), "This is an invitation to your cousin's baby shower -- and it's going to be the weekend of my 40th birthday." Nobody had told me. I just KNEW. His cousin was pregnant; I knew her due date was mid-February; logic dictated that her shower would probably be held about a month before that, and my birthday just happens to be in mid-January. But beyond logic, I KNEW in my bones. Of COURSE I would have to spend my 40th birthday weekend at a baby shower. That was just the the way my life seemed to be going these days.

I opened the envelope -- and of course, that's exactly what it was. My birthday was on Friday, the shower was on Sunday. I cried for well over an hour. Bad enough to be turning 40, crossing the rubicon, as it were, without a baby in my arms, while suffering through the indignities of infertility treatment -- but to have to spend that weekend at a BABY SHOWER added the ultimate insult to injury.

I didn't see an easy way out, so I RSVPd yes. The shower was near where BIL lived, so dh drove us there, and SIL & I went together. I don't remember a lot about it, except that it was (thankfully) a smaller shower than some I had attended, perhaps about 40 ladies in all, at an Italian restaurant. I sat at a table with SIL & some of dh's cousins, & (also thankfully), the conversation didn't entirely revolve around babies.

A couple of days later, on Wednesday, Jan. 16th, I noticed a funny rash that had broken out on my neck, just below my right ear. It tingled/burned, and was also itchy.

Dh happened to have an appointment the next day with our family dr and, on an impulse, I tagged along, hoping he would be able to have a quick look.

Family Dr took one look at the strange patch on my neck and immediately said, "That looks like shingles."

SHINGLES??!!

Family Dr gave me a prescription, saying that, since it seemed to be in an early stage, it might help to minimize the discomfort as well as prevent the shingles from spreading. And it did, although it took awhile to disappear completely. Thank goodness I decided to go with dh when I did. I used aloe vera gel to soothe the itching & burning.

When I got to work, I immediately started consulting Dr. Google to learn more about shingles. What I learned was that the chicken pox virus I (and probably you) had when I was a kid (pre-chicken pox vaccinations) never really left my system. It went underground, dormant and, most of the time, never resurfaces. But in some adults, for reasons that aren't entirely clear, the virus suddenly resurfaces in the form of shingles. I did read with interest, however, that one suspected cause of shingles is stress. Hmmm....

Shingles cannot be spread to anyone who has also had the chicken pox virus. However, if you haven't had chicken pox but get exposed to shingles, you could get shingles or the chicken pox.

Chicken pox can be harmful to pregnant women -- and the babies they are carrying. Reading this made me feel sick to my stomach. I called Family Dr back to ask him about it. He reassured me that it was highly unlikely, and reminded me that most adult women had been exposed to the chicken pox virus. But we should find out whether dh's pregnant cousin had.

I couldn't talk to her myself. I just couldn't. Dh made the call for me. Cousin hastened to assure me it was all right, she'd already been through this when her nephew came down with the chicken pox, and yes, she was immune. Talk about relief!!

*** *** ***

Friday, Jan. 19th
, day 13, I was back at the clinic. Sitting in the waiting room at the ultrasound clinic, I struck up a conversation with a woman who had a little girl in a stroller with her. The little girl was about 3, her mom had a British accent. There was something vaguely familiar about her, so I checked the sign-in sheet on my way out from my ultrasound for her name, and I realized that, hey! I know this woman. Again, we both worked for the same company in the same location, & had belonged to the same lunchtime group awhile back.

I went back into the waiting room, called her by name and re-introduced myself. We laughed, and she said, "I won't tell if you won't!" She told me her daughter had been conceived through fertility monitoring; she and her husband were now trying for a brother or sister. I suggested lunch some day; she told me she never took a lunch hour: she worked through her lunch and breaks so she could shorten her work day & pick up her daughter from daycare. Daycare issues were also why she had to bring her daughter with her to the clinic in the morning. I marvelled once again at the lengths we go to in order to try to have a child.

Later that day, K., the office manager, called with the disappointing news that both my bloodwork & ultrasound were essentially at baseline. "We'd like you to come in to discuss what's next," she said. I told her about my shingles diagnosis and asked whether that might be having an impact on the cycle; she said it was possible but she didn't know for sure.

We returned to see Dr. RE a week later, on Friday, Jan. 26th (cd #20). He asked us what our plans were. I said we'd committed to three IUI cycles with injectables at the outset, and we'd still like to complete three cycles. "Obviously, if it's six months down the road, and the results have been such that we still haven't completed those cycles, we'd have to rethink our options," I said.

Surprisingly, Dr. RE said he thought that was a good plan, that "you probably should try three or four cycles of any particular treatment." (I guess it was a glass half full day.) He said I responded well to the previous cycle, and my initial FSH results this cycle had been encouraging. But he added, "If, after three or four cycles, you still aren't pregnant, I'd recommend you go on to IVF, or stop... you have better things to do with your life."

We chatted a bit about IVF & the dosages required. I reminded him he hadsaid the placement of my left ovary would make retrieval difficult, and he said, "Well, I haven't abandoned a patient yet!" (This sort of flipflop drove me crazy.) He asked me where I was in my cycle: I said day 20, & I'd noticed some nice quality cervical mucus over the last day or two. "Let's take your blood & see where you're at," he said. I noted in my journal, "Left feeling reassured & satisfied."

K. called later that afternoon: sex every two days for the next week, back on Friday, Feb. 2nd (cd #27) for bloodwork. I noted that my temperature still hadn't gone up. K. called me later with my bloodwork results: my E2 levels had dropped, although my LH was high and progesterone was up. "At this point, there's not much we can do, except wait for day 1," she said.

My period finally arrived on Friday, Feb. 16th, day 41 of my cycle. On to the next...!

Wednesday, June 22, 2011

The Treatment Diaries: Addendum to the last post...!

I didn't mean to hit "publish" on the last post... I did it accidentally.. and the problems I've been having with Blogger lately (grrr...!!) meant it wouldn't let me open & resave as a draft. I had to copy & paste in a Word doc, delete my post, then copy & paste back into Blogger -- then go through & clear all the weird formatting.

When I did it a SECOND time, I thought, "I give up!" :p I decided to let the post stand & finish it in a "part 2" if you will (even though I WAS almost finished, damnit...!)

Anyway -- AF FINALLY arrived on Dec. 8th -- day 57!! which still remains a personal record for me. (Woohoo.) :p

However, because it was almost Christmas vacation and the office would be closed anyway, I opted to wait until my NEXT cycle. I called the office and said I would see them in the new year.

Here endeth the longwinded saga of my first IUI cycle...!

The Treatment Diaries: IUI #1 & beyond: September-December 2000

Warning: LONG POST!

Sept. 18, 2000
, found us back at the clinic for the usual routine of day 3 ultrasound, bloodwork and a chat with Dr. RE about how we were going to proceed with this next cycle. "You're going to need a LOT of drugs," he predicted. He proposed a combined regime of both Clomid (100 mg daily) and 100 IUs (2 vials) of Puregon daily for four days & return for monitoring. He explained that the Clomid would tackle the pituitary gland & hopefully make my ovaries work harder, so I wouldn't need quite as many injectable drugs. "Any problems with the injections, just page me," he said, patting my shoulder encouragingly.

Later that night, I wrote:
Survived my first date with the needle, about 9 p.m.... seemed to take forever to get everything set up -- and of course, I stabbed my finger with the mixing needle as soon as I tried to pull the cap off! (& so had to toss it) When I finally had a full syringe in my hand, I had to pause and look at it, wondering, "What the heck am I doing to myself?" I was on the verge of tears -- a tad shaky (oh, great!) -- breathing hard. Finally, I took the plunge, so to speak. (Right side.) It didn't hurt going in, but did a little as I injected and then pulled it out. I just sat there for a few minutes afterward, almost afraid to move. (Luckily, there's plenty of cushioning there!!) I told dh to go upstairs, because I knew he's make me nervous, and I could hear him pacing upstairs, which didn't help matters any...!

When it was all over, I called to him that he could come down. He brought me down a little band-aid (! -- not really necessary, but appreciated) & a hug and told me to tell the girls on my e-mail list how proud of me he was.
I did the injections every night at the kitchen table. I meticulously cleaned it off with Lysol first, laid some paper towels down & then laid out my vials,syringe, sharps, etc., on top of that. Someone had told me the injections didn't hurt as much if you numbed the area with ice first, so I also had some ice cubes at the ready.

The next night, I wrote:
Prep went smoother than last night, but when the time came to do the injection, I realized I hadn't iced the site first. (Left side tonight.) Thought I'd try to do without, but the needle pricked the skin and I chickened out & got the ice. (Hope I didn't contaminate the needle.) It was harder going in tonight. I felt shaky & teary as I was doing it. The first site I scratched started bleeding as I actually did the injection. I hope I did it OK. It bled a little more tonight than last. (I had dh bring the bandaids again!) I find I have to sit quietly for awhile after. Some redness and soreness (perhaps the effects of the ice wearing off, too?).
Wednesday night, Sept. 20 (cd #5, day 3 of the Puregon), I thought I felt some hot flashes. Later that night, I wrote:
I'm getting much better at the mixing... but it still gives me pause when it comes to actually injecting...! The ice helps... a little. Going in isn't actually too painful -- it's the actual injection & aftermath that's painful. I usually sit at the table for a few minutes and then on the couch, quietly.
Friday was a clinic day -- day 7 of my cycle & day 5 of the Puregon. There were just two people ahead of me in the lineup for ultrasounds. However, my glee and anticipation quickly deflated. I wrote down my measurements with this discouraging note: "In other words, no progress, and I LOST a follicle!!" :p I also recorded this conversation with the u/s technician:

Tech: Are you on hormones?
Me: Yes -- I 've been taking shots!
Tech: What does Dr. RE say about this?
Me: He's stumped.
Tech: How old are you?
Me: 39.
Tech: (shrugs) I'm sorry, but this is what I see. I wish I had better news for
you.

I wrote:
I was nearly in tears. This is so frustrating. Shooting up every night... 4 nights x 2 amps = 8 amps @ approx. $75 each = $600 to date... and NOTHING.
Even more frustrating, although we arrived at Dr. RE's office early, around 7:30, and waited an entire HOUR in hopes of discussing my results with him, we eventually were told that he had called in sick that day (!!). I arrived at the office just before 9 a.m.

Later that day, the office manager called: she had discussed my results with Dr. RE over the phone & I was now to bump up my dosage to 3 ampules (150 mgs) a day. I must have expressed some concern, because I noted in my journal "it's not a huge whopping dose." Nevertheless, after duly injecting myself with three amps that night, I wrote in my journal, "Is it supposed to hurt so much afterward? Am I doing this right?"

By Sunday night -- less than a week after starting -- I had injected myself with 17 amps total, or $1,275 worth of Puregon. Before committing to this course of action, I had checked out my coverage with my company's medical benefits plan. Strangely enough, while the IUI itself was not covered by our provincial healthcare plan or my private company plan, the sperm wash was. As for my drug coverage, the benefits people told me there was a lifetime maximum of $1,500 for fertility drugs. I had almost reached lifetime max in less than a WEEK.

Monday, Sept. 25th was a clinic day again. Left ovary: 0 follicles. Right ovary: 0 follicles. "The more drugs I take, the less I get," I wrote sadly in my journal.

Office Manager called me later in the afternoon: my estrogen levels were well over 1,100 -- "that's good -- there must be something there they're not seeing," she said, and told me to come directly to the office for an ultrasound the next morning.

Tuesday, Sept. 26th, cd #11, day 9 of Puregon: Went to the RE's office, where the office manager did the ultrasound for me herself. "Looks like a follicle to me!" she said encouragingly. There were actually two on the left side and four on the right, the largest one measuring at 14.

Next, we saw Dr. RE, whose comments were on the "glass is half full" side that day. He said the results from the u/s clinic the other day were "not acceptable," and that I obviously WAS responding (although he'd like to see more large follicles).
"You need a LOT of drugs," he commented, but added that wasn't unusual for "a woman your age." (Thanks, doc... I think...!)

Thursday, cd #13 (with the bill for my drugs now approaching $2,000), I went to Dr. RE's office for bloodwork and then returned there again in the afternoon for another ultrasound, this time performed by Dr. RE himself. My E2 level had skyrocketed to 2,800 and I had one follicle approaching 18-20mm. "Excellent -- way to go!" he said enthusiastically. One more day with the Puregon (26 amps, bringing my total Puregon costs to $2,175 over 11 days), he told me, bloodwork tomorrow morning, back for another ultrasound in the afternoon (what kind of excuses was I giving my bosses??) and then a hcg/Profasi shot that night, with the IUI likely on Sunday afternoon. (Well, at least I wouldn't have to worry
about missing work for that!)

Friday, Sept. 29th (cd #14): "Wonderful...we finally got a good cycle out of you," Dr. RE pronounced after myafternoon ultrasound. Of course, he deflated my ego with his next observation by saying my left ovary appeared to be tucked behind my uterus, & that "I wouldn't want to do an IVF extraction on you." (Hmmm.)

He provided me with the Profasi & instructed me to inject myself at 10:30 p.m. that night -- then return to the clinic on Sunday for the IUI at 10:30 a.m. However, we'd actually have to be at the clinic with dh's sample by 9-9:30, so that it could be washed & prepped for the IUI. He gave us the option of dh producing a sample onsite, or at home, but with the stipulation that we'd have to deliver it to the clinic within a half hour. At the best of times in good traffic, even on a weekend, that sort of timing would have been a stretch, so we said we'd come in.

Saturday, Sept. 30th journal entry:
Yesterday I didn't feel too bad. Today I feel like I have rocks in my ovaries!! Not really painful, but uncomfortable. A woman on my pg loss e-mail list wrote, "I swear I could feel the buggers pop," and I agree.

It has been a quiet day. Dh is helping his brother do the ceiling in their basement. If he hurts himself somehow, I'm gonna kill him...! So I have spent a lazy day, reading the papers, weeding out my e-mail inbox, watching TV (a repeat of "The Champions" on CBC Newsworld, in honour of Pierre Trudeau). [The former prime minister had just passed away.] I feel very tired and a little emotional. I can hardly believe the day is almost here. Whether it works or not, I'm sure I will be a basket case!! The next two weeks are gonna be hard...!

Sunday, Oct. 1: Dh delivered his sample at 9 a.m. And then we waited. And waited. And waited some more.

Around 11:30, we were ushered into the procedure room. Dr. RE said it had taken him awhile to wash the sample, as it contained a lot of "debris." He also noted the count was low, about 8.4 million. Motility, however, was good at 67%, and I had four good-sized follicles.

The IUI itself was over with fairly quickly. I noted the speculum was probably the most uncomfortable part, & there was a cold rush through the tubes. "You don't have to stand on your head or anything," Dr. RE said, "but take it easy for the rest of the day."

In my journal, I've written down a list of "Problems" that he apparently went over with us: (followed by the note "Why didn't he go over all this with us BEFORE we did this??")

  • low estrogen/small/few follicles -- have overcome that to some degree
  • low sperm count: wash will help some...
  • bicornuate uterus: again he expressed an interest in seeing the actual film of my HSG, and mentioned the possibility of surgery.
  • cervix appears to be chronically inflamed. He asked whether I had followed up on my irregular Pap. I said yes, & he said it was very important to keep on top of that.

He told us to come back in a week's time for an ultrasound & bloodwork. The total bill, drugs included, came to more than $2,300.

As I recall, I bawled all the way home from the clinic. It hit me that I had four mature follicles. What if all of them fertilized?? Twins I thought I could deal with, but quadruplets??

Dh talked me down from my momentary panic attack & suggested we go somewhere for brunch. When we got home, I took a nap for three hours. I am not generally a nap-taker, but I was physically & emotionally exhausted.

Saturday, Oct. 7th, we got up at 5 a.m. (!) & took the 7 a.m. train into the city. First to Dr. RE's office for bloodwork, then to the ultrasound clinic, where there was a huge lineup, at least seven women ahead of me in line and three or four behind.

When the technician dictated the measurements to me to write down, she had me note one follicle with an "E." Note in my journal: "I couldn't get her to tell me what it was for!"

Later that morning, there was a message from Dr. RE's office: we were to return in one week for bloodwork only. I knew what that meant: a pregnancy test.

Monday, I left a message on Dr. RE's voice mail, asking what the "E" stood for. His officer manager called me back: she said it meant "echoes," or an echogenic cyst, left over from ovulation. That still didn't tell me why it was noteworthy.

Thursday, Oct. 12th, cd#27, 11 days past IUI, my temperature dropped, and I began spotting. I knew that was the end of it. I called the clinic: what should I do? Consider it the start of a new cycle? Come in Saturday as scheduled? I was told to come in the next morning.

Friday, Oct. 13th (yep, Friday the 13th...!!): I had my bloodwork done in the morning, & got the call later that afternoon. As suspected: negative.

*** *** ***

Did I want to do another cycle? Yes please. : ) Right away? So long as the dr said it was all right. The office manager told me to come in the next morning for an ultrasound & bloodwork to ensure I was back to baseline before they gave me more drugs for another cycle.

So we got up at 5 a.m. on Saturday (again!) & took the 7 a.m. train into the city to be at the ultrasound clinic when it opened at 8. There were still two large follicles on my left side.

At Dr. RE's office, I was given a package of clomid, but told to wait for further instructions before I started taking it. If all went well, they'd give me the Puregon to start injections on day 7.

But all did not go well. :( The office called later that day & told me to hold off on taking any meds: I did have two follicles left -- cysts, & they were filled with fluid. "It's nothing to worry about," I was told, "but they have to clear up before we can begin again... Call us on your next day one."

"I will," I said, "so long as it doesn't conflict with Christmas -- we're going away then." I was told the office would likely be closed for several days over Christmas anyway.

Monday, Oct. 23rd, I was back at Dr. Ob-gyn's for a repeat Pap/colposcopy (which showed no significant changes for better or worse since the last examination). I told him that Dr. RE had described my cervix as "chronically inflamed." Dr. Ob-gyn begged to differ, saying that aside from the very superficial changes he had seen at my last visit, he didn't see anything that concerned him, and he didn't think it would be a deterrent to our efforts to conceive. Who to believe??

Tuesday, Nov. 14th was cd #33 -- normally not a long cycle for me, but my temps were still low and there was no sign of AF. I called Dr. RE's office. Should I be concerned? Wait & see? Could it be the drugs? The cysts? The stress??

K., the office manager, said it sounded to her like I was having an anovulatory cycle. She suggested I wait a few days & then come in for some bloodwork.

Thursday, Nov. 16th, I received a letter from Dr. RE advising that his office was moving, as of Dec. 1st. This would mean travelling a further three subway stops north of his current location. On the brighter side, ultrasounds would now be done at a different office, a short walk away from Dr. RE's office.

Friday, Nov. 17th (cd #36), I duly reported to Dr. RE's office for bloodwork. The conclusion was that my levels were moving back to baseline and that Aunt Flo should be paying me a visit shortly. "Wait another week, and if nothing happens, call us again," K. advised me.

Two days later, I began spotting. I spotted on and off for the next several days. What the heck was going on??

Thursday, Nov. 23rd (cd #42), I called the office again. The next day, I went for an ultrasound & bloodwork. No trace of the cysts remained. Dr. RE wasn't in, but there was a prescription for Provera clipped to my file. K. said it was used to induce a period.

K. called me with the results of my bloodwork that afternoon: my estrogen levels were on the rise. "You're having an ODD cycle!" she said wryly. "You may have hit bottom and are starting to rise again." She told me to take the Provera, all 10 days' worth, even if my period started -- and to call the clinic when it did.