Biopsy

Not a word I hoped ever to write again as a part of my current experience.

But Friday afternoon I had a biopsy. Actually two. On my right breast.

A week ago I  had my annual mammogram basically just to check it off the list of requirements for the Denver clinic in preparation for our future FET.

They did two mammo scans of the left breast. Two on the right. Then I went to sit in a back waiting room while the doctor looked at the films to be sure they were happy with them. The tech came out. More images were apparently needed on the right side. FIVE more images to be exact. Ugh. More imaging done. Then back to the chairs.

Then the radiologist came out and said that it all looked OK but they wanted to do an ultrasound on the right side anyway, because I'd reported some pain in that breast. So they did the ultrasound. I was actually calm up until that point, and even into the beginning of the scan. But as the sonographer was doing the scan, I could tell she was seeing something. I started to feel scared. I felt like I felt at age 27, when I was about to be diagnosed with lymphoma. I tried to talk myself out of how afraid I felt.

The radiologist came in and said that the ultrasound revealed two masses. "Don't worry," she said. "But these masses weren't there last year when you had your mammo and sonogram. We need to biopsy them just to be sure."

That was eight days ago. I've been trying not to think about it since then. It is what it is; why suffer in advance? If it's bad, I'll have plenty of time to freak out and re-collect myself. An adage I take from having cancer before.

So I successfully held off thinking about it much until today. And today I was busy supervising a trainee dealing with a patient's psychiatric emergency, so that took a lot of my attention. But when it came time for the biopsy, I was scared.

A different radiologist performed two core needle biopsies on my right breast: one mass at 1 o'clock and one at 6:30. Both of them were pretty deep inside the breast. The radiologist took 10 tissue samples in total. The procedures took awhile. It wasn't comfortable but not terrible either. One site bled. They said a hematoma was already forming as I laid there on the table (awesome). Now I just feel bruised and sore (The sites are bandaged so I can't tell anything about how they will look yet).

About halfway through the procedure I started shaking. I told the team I was cold, because I was in fact a little cold. But truly I think the shaking was my nerves. I have laid on too may tables and had too much bad news. Like there's some neural imprint of my past on me. After the biopsy they took three more images to visualize the titanium clips they'd placed in my breasts to mark the sites. Now that I'm at home in bed, my whole breast is achy and I've been wearing ice packs on it to numb it a bit and reduce swelling. The achiness makes it hard not to think about what might happen.

So now I wait. Results are expected back by Tuesday. I hate waiting for results. I hate imagining my tissue culturing in dishes in a lab, potentially yielding up negative information that could throw my life into a tailspin. I hate being afraid. I hate even the slight possibility that this could be cancer again.

Mo

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Blechiness

I'm feeling blechy today. And this is going to sound strange, but I'm luxuriating in it. Although it isn't pleasant, it is so reassuring to have some symptoms. So the fact that even sitting with patients today, I was feeling distracted by nausea? That I was decidedly nauseated even after eating, when usually I feel the worst when my stomach is empty? Well, pretty damn cool, in an I-don't-feel-so-good kind of way. I must sound like a masochist, but anything that has me feeling pregnant has me feeling pretty happy.

So count me as blechy but happy. Also count me as bloated, constipated, and tired, but that's ok, too. Weird that my breasts aren't really sore with a progesterone level of 57. I noticed last night that they are looking mighty big, but they don't hurt so much.

I also have to say that even though I feel some nausea, I think I'm getting off pretty easy. I'm not out and out vomiting, for example, which some women really struggle with. And I'm able to eat and drink (have to be careful about what, but that's ok). I've had brief wonderings if I just think this is easy because it is a piece of cake compared to chemotherapy nausea. That was the pits. After one of my infusions, I remember throwing up literally 40 times in a row, just dry heaving after a while, then lying with my face against the bathroom tile floor because I was too spent to even try to crawl back to bed. I remember fearing that I might die - that my stomach would eventually just rupture from the effort. That was rough. I felt like I was ingesting poison. And I guess I was. Poison for my lymphoma, but also for the rest of me. I got through it, though, and it saved my life.

But this nausea? Uncomfortable, but luckily definitely manageable. I know many women have it so much worse. I think it helps me so much too that this nausea is because something wonderful is hopefully happening inside of me. It's not because I have a life-threatening illness. It's because I'm trying my damndest to grow another life inside of me. That helps a lot, I think, to remember the purpose of this nausea.

Oh, and I received a message from the Denver nurse that I can drop to 2 estrogen patches and to 1 progesterone suppository (+ the 1cc PIO nightly), and then at the end of the message she added, "and I'm not even going to talk about that beta." OK, then. So I guess she sees it as no problem (except for the problem that it keeps getting drawn), which is basically what I surmised online and from your comments. Thanks, as always, for the reassurance.

Mo

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You guys are incredible! And test results (and more test results)

You guys! YOU GUYS! I can't believe how many of you came out of the woodwork to wish us well. Thank you! Wow!! We're really humbled and touched by your responses. I think some of you may have had a stronger emotional reaction than we did! Of course, I know we're a little battle scarred at this point, so I'm not beating myself up for still being pretty guarded. Sometimes I think reading your responses and reactions helps me to be able to access and feel what I would if we hadn't had such a run of bad outcomes. Your thoughts and well wishes - WOW. Thank you : ) Really.

We had blood work drawn yesterday, so I will duly post the results, as always. Everything is looking fine:

progesterone = 53.15

estrogen = 683

beta HCG = 65,543

So all is well. I'm hoping I can get them to stop with the betas soon, but these phlebotomists have a mind of their own, I tell ya. My nurse from Denver even brought up the idea of lowering the estrogen and progesterone (gasp) - which I promptly put the kibosh on. I just got a heart beat!! - I can't change anything just yet! So she relented. I agreed to drop one progesterone suppository on Tuesday (leaving me with 1cc of PIO daily + 2 suppositories... she'll fight me about the estrogen patches again next week she said.)

In other test result news, I didn't mention it, but last week during the time I had that bad cold, I also had a dermatologist appointment scheduled to have a lesion on the back of my neck evaluated. I've had this progressively more ugly slightly smaller than a dime sized keloid scar there. It's right at my neckline where the tags on my clothes tend to rub, and so it's constantly getting irritated. This past several months, it seems like it's been a constant almost-wound, that even showering opens it up, and I've been covering it with a bandaid and ignoring it. I guess for far too long.

The dermatologist biopsied it and left me a message yesterday to say she had the results. Now, I figured if she had the results but didn't say what they were on this psychologist's confidential voice mail, that that meant one thing, and one thing only: the results must be positive. Damn Irish American pale pale complexion! And I was right. I have a decent-sized basal cell carcinoma on the back of my neck. I'm not freaking out (melanoma - anything beyond stage I - would freak me out), but she does want me to have the whole thing excised soonish and make sure I have clean margins, etc. I talked to Will about an hour ago about it and he says I should go to a plastic surgeon instead of her, since it's not so small and it's visible and is going to be large enough to require stitches, etc. So, I'm mulling all this. I don't know if any of you guys have experience with such things, but chime in, if so. One thing the dermatologist emphasized is that I need to get it taken care of now - not wait 9 months until the baby is delivered (ha! ha! until a baby is delivered! That's hilarious! She thinks I'm having a baby!)

Ok. Yeah. So still processing a number of things over here:

(1) According to you guys and according to my doctors, I am pretty knocked up. At least for today.

(2) I've got an annoying neck lesion I need to have removed.

(3) I have more love and support from you guys than I could ever have imagined. Isn't this when you're all supposed to un-follow me and stop reading? Guess not. Or not yet at least. Thank you for all of your kind words and encouragement and positive thoughts. Really, just beyond words thank you!

More soon.

Mo

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A saturday in the life, plus HCG chart

I went for a super relaxing acupuncture session this morning and then to brunch with Will and a friend of ours and her young daughter. Remember the friend I had mentioned who was so ill with cancer, so out of the blue? He did much better and hung in much longer than anyone expected, but sadly he passed away a month ago. We were out with his wife ("widow" just seems like the wrong word at our age) and daughter. They are doing amazingly well, both of them. We are trying to see a lot of them. Till they get sick of us, even. OK, maybe not this, but we want to make sure we continue to surround and support our friend and her child as much as we can.

I had a nice afternoon nap (so tired lately) and now need to rally and catch up with a bunch of my medical record charting. Bah! Luckily, I can do it from home. Will is on call at the hospital, so it is just me and my boxer Moxie solo tonight.

In addition to tired, my appetite is a little off. The cramping is now coming and going (and when it goes, I get scared). Breasts are somewhat sore, but mostly not killing me. I'm thirsty. I pee constantly.

I decided to try to make a graphical representation of the betas so far, from 9dp5dt to yesterday, which was 15dp5dt (see below). Looks reassuringly nice and strong. The number doesn't look THAT high, does it? You guys really think it might be twins? That would be ok, but please please please no more than that. I'm thinking numbers like these could just be a solidly implanting singleton, which would be absolutely 100% fine with us. (My preference, as I worry about the increased chance of complications with twins. And triplets? GAH. Way too nerve wracking. Don't even get me started.)

Hoping things are still going strong in there. I have contemplated cutting off the front of my stomach and replacing it with plastic (BPA-free, of course) so I can check on things more directly when I get nervous. Which would only be three to five times a day. Holding off on this great idea for now.

Small prayer to the universe, hand on belly: please stick around, please be ok, please stick around.

Mo

source: http://www.babymed.com/tools/hcg-calculator

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“Fall seven times, stand up eight”

This quote is posted on the website of our friend who has stage 4 cancer. The one whom I wrote about at the beginning of November, who was intubated and expected to pass away soon.

Well...he didn't pass away. He eventually got extubated, which we thought was a miracle. He managed to get out of the ICU and into a regular oncology ward room, which we thought was amazing. Then he had the feeding tube removed, then he went to rehab, and now this week, he is back "home" or at their temporary apartment at least, since they came all the way across the country to get him help here in NYC.

We can hardly believe it - it is incredible. Outstanding, a miracle.

Make no mistake, he is a very, very sick man, but we are so pleased that he is going to hopefully be able to survive longer than everyone expected - and in the process have more time with his wife and 4-year-old child. And hopefully now that he is home, he can die on his own terms, however he wants to have that happen, surrounded by his wife and toddler and mother and sister, in as comfortable and as dignified a way as possible. And that is really good news within the context of this terrible situation.

Not exactly sure how this quote applies to our friend's situation - he has certainly fallen and stood back up multiple times, showing incredible perseverance. But I think now his journey is about something else. He could choose to try to "beat" the cancer if that's what he wants to do, and although that's impossible, it wouldn't be a bad stance to take. But I think it would be just as honorable and courageous to do something else. Something like, choose to fall as gently as possible, or choose to give oneself permission to fall and not worry so much about the standing again part.

I guess that's sort of the question that comes up for me when I read this quote: what does a proverb like this mean when you are facing not being able to keep standing up? Where is the line between "giving up" and accepting a tragic and unwanted reality?

I don't know the answer. But however our friend navigates the coming days and weeks, we wish him good management for his pain. We wish him as much time with his wife and daughter as possible. We wish that he feels viscerally the love of all those around him. We wish him peace.

Mo

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Depot Lupron: what doesn't kill you makes you...hotter?

I just started month two of the dreaded Depot Lupron to treat my stage III endometriosis and presumed beta-3 integrin deficiency. I don't know about any of you out there who've taken this, but for me this stuff is poison to my body and my mind. It honestly ranks up there at the top of the list of all-time unpleasant infertility-related activities for me.

I feel just completely taken over by Depot Lupron. This time most of the first month wasn't so bad physically (which is why you haven't heard me whining before this). For the first three weeks, I didn't seem to have many mood effects and experienced really no hot flashes. If it hadn't been for the prodigious three weeks of bleeding, I would almost have thought I'd gotten a bum batch of the stuff.

But all that changed about two weeks ago. Suddenly, the bleeding stopped, and instead I felt...hot and sweaty...had heart palpitations....and felt a profound bleakness descend (as evidenced in my last post).

Because I struggled when I took Depot Lupron last summer, I asked Dr. Schl. if there was anything I could take that would help ameliorate the mood and physical symptoms (apparently there is something, called "add-back therapy" that replaces a bit of the progesterone that your body isn't making). I asked for it not just for my sake, but for poor Will's and Moxie's sake. Not to mention the sakes of my patients and of the populace of the greater New York City metropolitan region at large. So this time, once the hot flashes and blueness descended, I started taking small doses of synthetic progesterone. It hasn't eliminated my symptoms, but I think it does lessen them a tad (hard to tell, but I haven't had to change clothes in the middle of the night because I'm soaking wet, or gotten super irritated at anyone, or killed Will, or taken a mental health day...so I think so).

So these little white pills seem to be helping, but the original prescription didn't include enough pills to do this twice (originally, we were only doing one dose because we were planning to cycle with the egg donor in December).  Given this, I called my nurse. You may remember, I haven't been thrilled about her from the beginning of our donor egg adventures...

When I reached her, I asked for a refill, and she said ok. But she also said (1) that I am the only patient she has ever heard of ask for a prescription for add-back therapy at the Denver clinic, and (2) that she thought it might decrease the effectiveness of the Depot Lupron for dealing with endometriosis and beta-3 integrin deficiency (I can't remember her exact words on this, but she raised it as a concern of hers). So I asked her to check on this and please get back to me.

I got off the phone and realized I was left feeling vaguely uneasy after our call. Why tell me I'm the only patient to ever request this? Her comment made me feel like I was asking to be coddled. Once I realized that's what was brought up for me, I was annoyed. Why shouldn't I be able to take something to make this a little bit easier if it's out there? Why shouldn't all of us?

And then on top of that, why opine that taking the add-back therapy might reduce this awful drug's effectiveness? Because the only thing worse than feeling like crap while taking this damn drug would be taking this drug and feeling like crap for no reason. And why would Dr. Schl. have prescribed the add-back therapy if it could cancel out the effects of the Lupron treatment?

Sigh.

Yesterday I got an email from her that Dr. Schl. said all is fine, nothing to worry about, take the add-back, the Depot Lupron will still do its job. So really, was all that necessary?

It's been an occasional pet peeve of mine throughout my medical journeys, this implying you are high maintenance for asking to have something suck just a little bit less. When I had lymphoma in my twenties, I had a mediport surgically implanted under the skin on my left upper chest to receive my infusions. For every chemotherapy treatment, the nurse would place a needle (called a Huber needle) through the skin that covered the port and connect it to my IV line. You should check it out, folks, because this is no ordinary needle; it's more like a thumbtack. And so it hurt. Especially because it was done every other week and your tissue really doesn't heal well when you're getting chemotherapy. I knew that there was a new cream on the market, a topical analgesic called EMLA. So one day I screwed up my courage and I asked if it could be prescribed for me. And I was told "That's only for pediatrics. We never prescribe that for adult patients." Which silenced me immediately. I felt like a big baby.

Similarly, after our first and second pregnancy losses at 7 and 8 weeks, my then-ob/gyn advised that I should have my D&Cs in his office sans anesthesia or any pain control beyond ibuprofen. So I did, twice, because I felt like such a wimp asking to be knocked out, when he'd made it so clear after I asked for an OR procedure that it should really be fine - and his other patients didn't mind it. Actually, I found the in-office D&Cs to be terrible, both physically and psychologically (especially because one time the equipment malfunctioned and he had to manually scrape the lining of my uterus). And consequently, I no longer use that ob/gyn. But why make it so tough?

So, yeah, obviously this phone call touched a nerve for me. And Depot Lupron has the effect of exposing all of my nerve endings and making everything feel...well...hotter. This nurse isn't so bad, but I do wish she'd keep her opinions, especially when they aren't based on scientific evidence, to herself.

Looking forward to finishing the dreaded Depot in about a month. Really hoping my sister checks out and can cycle so we have something to transfer, and then hoping that these two months of suffering help implantation go at least a little better than it might have.

I wanted too to say thank you guys for all of your comments and thoughts on the last post. It helped, it really did, to read that you all get it, or that you might not totally get it but you realize that. It means so much that you've stuck with us even though the tough times, that you're still reading and rooting for us. We appreciate it more than we can say.

Mo

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Perspective check

I just received a call from a friend to ask advice on how to deal with an unthinkable situation.

This friend reached out to me because of my professional expertise on behalf of another couple, whom we also know.

The husband in the couple was diagnosed with a rare cancer, stage 4, in mid September. The diagnosis was out of the blue really. The couple are our age and have a 3 year old, who joined their family from China via adoption around age 18 months.

They started aggressive treatment right after diagnosis and the husband has been doing all right. A few days ago, his doctors determined he's not responding to treatment and has taken a significant turn for the worse. They had to intubate him, and he will likely pass away in the next several days.

The friend wanted to know what and how to tell the child. And whether the child should be taken to see him in ICU in this state or just not ever see her father again.

It's a tricky question and one I've sought professional advice on from child specialists in psycho-oncology since getting the call.

My heart breaks for these friends, for their impending loss. My heart breaks for their child, who has already lost two birth parents, and then a set of chinese foster parents, and now will lose her adoptive father as well. It is just so incomprehensibly, completely unfair. Not fair at all.

For us, this terrible situation also offered us a perspective check. Our situation is rough. And I am grieving our latest setback and am beyond frustrated at our situation. But our situation is not this horrific. We will survive. We will go on. And although I can't see my way out the other side right now, we WILL somehow get there, I hope, if we can avoid giving up.

If you could keep this couple and their child in your thoughts and prayers, I would ask you to.

Thanks.

Mo



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Given your history

It's a strange phrase I've heard from my doctors - first in relation to my cancer diagnosis, and now in reference to our infertility struggles.

What does it mean, "given your history"? Well, I've learned that it usually means a pessimistic prediction is about to follow.

For instance, a couple of years after being declared in remission from Hodgkin's lymphoma, I felt a small lump in my right breast. Not irregularly shaped, or too hard, or matted into the tissue (things I knew from my go round with lymphoma were baaaad), but definitely there. I had an ultrasound, and the mass was solid, not fluid filled (so not a cyst). The doctor looked at the ultrasound and felt the small lump and said something like, "Well, in a woman under 30, we wouldn't really think much of this - it's almost certainly a fibroadenoma (translation: totally benign) - and we would probably just watch it over the course of the next several months...but given your history, I think we should do a biopsy."

Which was negative, thankfully.

But examples like this began to occur repeatedly. And at first, I was grateful for the careful medical attention. After all, I had lost trust in my body's ability to work properly, too. But over time, I learned to not go to the doctor and report a symptom unless I wanted something invasive done, because "given your history" translated in practical terms to something like, "You were really unlucky once...and so now we have a higher index of suspicion over ever cough, ache, and fever just in case it's another unlucky (and unlikely) event."

And knock on wood, in more than 10 years, nothing else has turned up. And my "history" has faded into the background...not a big deal anymore, but just something mentioned in my medical history and then tucked back again where it belongs - in the past.

Flash forward to infertility and it's been almost the opposite battle.

I had a bad feeling about our reproductive chances from the get go, which is kind of funny (also kind of sad) in hindsight. We actually saw an RE before we even got married to get a reproductive workup, because I was so concerned. Based on what? Gosh, nothing really, except maybe what you would call a (not yet) mother's intuition. And the RE gave us the all clear. Everything looked great. Go out and have unprotected sex. And well...you can see where this has gotten us.

As our infertility losses have accumulated, we've heard repeatedly that each miscarriage is just bad luck and our likelihood of it repeating very low.

This was comforting to hear after miscarriage #1. It was significantly less comforting to hear after miscarriage #2. Then somewhat puzzling to hear it again after miscarriage #3. By miscarriage #4, hearing that we wouldn't miscarry again was irritating. And by miscarriage #5, it was downright infuriating.

It seemed that in infertility, our lack of a history meant that the physicians were not able to imagine we could fall outside of the population statistics. For most women my age, a miscarriage is not a repetitive event. A live baby is around the corner.

So it is only now after three years of grief, we are beginning to hear the words "Well, given your history..."

And I find myself wanting to half laugh, half cry. I've been trying to get this situation assessed for what I've thought it was for quite a while now, and only NOW are the doctors also beginning to see a pattern?

It's a funny thing, this lens that medical providers see you through. A lens colored by your personal health bad luck or a lens filtered by population statistics. Either one may have a lot - or very little - to do with the actual truth of the matter.

Same as my own lenses on the situation, I guess, which are sometimes colored mostly by my fears about a bad outcome and on another day, filtered by my hope, my drive to see this through and out the other side to a child in our arms.

It will be a glorious thing when "our history" becomes just that, something we've moved on from. Something we can look back on from afar and say, Remember how hard and unending those days seemed! So wonderful it is to be out the other side! It will be a wonderful thing when we can have our infertility history tucked where it belongs - a thing of the past that we have overcome.

Mo

The Colorado genetic counselor rocks

Thanks for all of your blogoversary wishes. We are ready to look forward to the coming year - and hope that there are fewer disappointments and more successes - please! Loved your comments reminding us to focus on what's important - our love for each other, and to be mindful of the accomplishments the last year has contained. We're with you guys - may this be the last year that this is an infertility blog!
So, finally, to fill you all in on the rest of the Colorado visit...
Our last meeting of the day was with Danielle, the genetics counselor. I'll be honest - I really didn't want to go to this. I mean, I spent an hour and a half with an M.D. geneticist in New York just a couple of months ago. What could this counselor possibly add? That said, once we met Danielle, I liked her immediately. And what she had to say perked up my ears rather quickly as well. We were drawn to Colorado because of their microarray technology. She said, however, that after reviewing our files, she'd spent the day meeting with the scientific director and making calls on our behalf because she felt that microarray wouldn't be enough for us, given my cancer treatment history and the fact that our losses have included both trisomies and polyploidies (overachievers, us!).
Basically, she said that microarray can only detect trisomies. Apparently, the way the technology works, microarray looks for alterations in the patterns of chromosomes - so one more or one less of a particular chromosome, a heterogenous problem. Microarray does not pick up polyploidy - because in this situation, there is an extra set (or sets) of every chromosome. And so the test reads it as normal, since it's a homologous defect across the entire set.
Who knew?
But surely, we're not the first couple to ever cross the Colorado Clinic's threshhold who's had a polyploidy plus a trisomy? I asked this, and Danielle assured me that although it is unusual, we are not.
But she said in our case (lucky us!), they were worried the polyploidy problem (usually a 1 in 1,000 occurrence) might have a tendency to repeat.
Hearing this, part of me was like YES! Finally, someone agrees with us that there is something unusual here - that these silly population statistics may not apply to us! This part of the information was super validating and welcomed. At the same time, I also had a Oh no, we are so f*cked up sort of reaction.
Bottom line, according to Danielle, we will need to do both microarray and FISH screening (the type of screening they use in PGD) to look for both trisomies and polyploidies. Because they do not want me to transfer embryos back thinking they are normal and then find out that they aren't normal after all. So they want to do a single biopsy of each blast (should we be so lucky to get blasts), split the tissue from each blast and send half of it for FISH and half of it for microarray.
Sounds good, right? The only problem is that each of these tests costs approximately $5,000. So it would add an additional $10k on top of the usual ridiculous IVF fees.
Ha. Ha. Ha.
Before we both fainted, Danielle quickly said that the Colorado clinic would never expect us to carry all of this cost and that they were already negotiating with the labs involved to waive fees so that we could have both tests run for no additional cost. In fact, she waived her $150 fee that day to get us started down the road of savings and said they were going to figure out how to shave $5,000 out of things somewhere so we don't foot the bill.
This was our final appointment of the day and we after we finished speaking with Danielle, we got into our rental car and drove directly to the airport to catch our flight home. What a way to finish out the day.
Our final impression was Wow. They are really thorough and have thought about our specific situation and what would be best for us. They are really looking out for us. Needless to say, we were impressed.
We'll keep you posted on what they're able to work out for us.
Mo