My TEBB is...

GONE.

(picture me screaming here)

The IV antibiotics worked. I am stunned. And excited. Like jumping-up-and-down excited. This cycle might be the first realistic shot of getting a BFP that we've ever had. Except that I think my endo might have returned, but that's another story.

I talked to Dr. K. She said we'll give it three cycles. If we're not pregnant by then, a laparoscopy—my second one—is likely up next. I figured that would be the case. I'm okay with that.

But for now, I am hopeful. Like through-the-roof hopeful. :)

I have so much to write about and no time to do it in the near future as DH and I take a little vacation, but I couldn't wait to share this news.

Three years of TTC

We are on cycle #30 of TTC. It's been three years since we started. That's a lot of TTC. And a lot of BFNs.

In some ways, IF has become comfortable—not enjoyable, mind you. I know what to expect. I know when I'll be extra sad or sensitive. I know when I can handle baby-related news with the greatest likelihood of having dry eyes. But I'm weary. Living with prolonged grief is emotionally draining. This third year of TTC has been noticeably harder than the prior year, probably because we've checked more and more things off the treatment list that haven't worked. I can see some good fruits that have come from this suffering. I know it has brought DH and me closer. I can sympathize better with others going through IF (like some of my clients) or anyone facing a difficult cross. As painful as IF can be, I trust that God will bring a greater good out of all of this. I may not know what that good is this side of heaven, but I know there is value and power in offering up this suffering. Without taking a more "eternal" perspective, I think it would be so easy to fall quickly into despair.

A good friend shared her BFP news with me recently. She was technically IF (according to NaPro's definition of six cycles) but never mentally crossed over...she hadn't been TTC "that long." She knew of our IF from the beginning and was supportive, offering frequent prayers for us. I tried to be happy for her, and in some sense I was. I am glad she doesn't have to delve deeply into the sad world of IF—either the emotional side or the medical treatment side. But when she told me the news my first feelings were ones of hurt. She waited until nearly the end of her first trimester to tell me. Why did she wait so long? I had spoken with her more than once since she would have learned she was pregnant and specifically asked about the latest in her TTC attempts each time I spoke with her. I guess I could see not wanting to tell "people" (in a general sense) until after the first trimester in case there would be a miscarriage, but I thought I was closer to her than that. I wonder if this self-pity is a by-product of IF. In my head I sometimes think others should feel sorry for me because I'm IF, so I also feel sorry for me. Now here's another opportunity to feel sorry for myself. I'm trying to give her the benefit of the doubt. I have no idea what's it like to decide when to share news of a first pregnancy. I guess if it were me, I'd want prayers from at least a few others as soon as I found out...especially with an increased risk of miscarriage (which she has). Maybe she was trying to protect my feelings by waiting to tell me...although the manner in which she shared the news with me was not sensitive to an IFer, so I doubt protecting my feelings was the reason. If you're super excited by your pregnancy, that means everyone you tell is going to be super excited as well...including your IF-for-three-years friend. (I did manage a fair amount of excitement in my response.) Apparently I never shared with her how hard pregnancy announcements are...or I didn't repeat it enough times before she got pregnant.

With her pregnancy announcement, it really hit me how left behind I feel. Just since last summer, there have been six weddings among our friends. Five of those six are pregnant or recently gave birth. We were TTC before most of them even started dating. I try not to be jealous, but sometimes I can't help it. IF is so hard.

As for this cycle, against my better judgement, I have hope. ;) (although I completely forgot to take Clomid at the beginning of the cycle...oops) I used to think that the more hopeful I was in the 2WW, the worse I'd feel when CD1 arrived. I guess for the most part, it has been true. But last cycle, for whatever reason, I had very little hope that the cycle would end in a BFP—with a week of TEBB staring me in the face, clearly something is still wrong—so AF arriving wasn't a surprise at all...yet I still felt as sad (and cried as much) as any other previous cycle. So if I'm going to cry when CD1 arrives regardless of my hope level, I might as well be hopeful now.

Do I know if the IV antibiotics got rid of my TEBB? No.

Am I putting way too much stock in quasi-pregnancy symptoms? Yes.

I have no breast tenderness at all. This is a change from usual. I always have a little bit of tenderness post-peak. Well, I'm pretty sure I always have it. I stopped writing it down a long time ago. But I still pay attention even if it's not recorded on paper. This could be just my brain trying to over-analyze things in an attempt to convince myself I could be pregnant. It has happened plenty of times before, and I've been wrong every time. haha Hopefully all the fun 4th of July festivities will distract me. :)

I'm free!

The PICC line has been removed! Yay! Free at last! :)

I didn't feel a thing as the nurse removed it. The "worst" part was actually when she was removing the tape that held everything in place, but that wasn't too bad.

I still have to wait another day before I can shower so the hole in my arm closes up. I don't often look forward to showers this much, but I can't wait!

Now we wait and see what happens. I'm mid-cycle now, so it'll be several weeks before we'll know if the antibiotics eliminated my TEBB. Of course, if AF doesn't come, that would be fine with me, too. :)

To be honest, I am scared. I am scared to hope. I am more scared of the disappointment if this doesn't work. I am scared that Dr. K could say there's nothing more she can do against the TEBB. I keep telling myself that I just have to trust God on this for whatever happens, but it's so much easier said than done. I may have to keep reminding myself every five minutes, "Jesus, I trust in you."

Life attached to a bag

It’s not so bad, really.  Most of the time I don’t feel anything.  Sometimes if I move my arm too quickly I feel pain in my shoulder or arm, but it’s brief.  My main concern is keeping track of the long tubing that connects me to the medicine pump so I don’t catch it on anything when I’m moving around.

The PICC line procedure on Friday went pretty well.  My definition of “pretty well” is that I remained conscious the whole time and it wasn’t horribly painful.  I did, however, nearly faint during the pre-procedure blood draw where they needed five tubes of my blood.  One of the labs was a pregnancy test—my second ever—and like last time (before my laparoscopy) it was completely unnecessary; one look at my CrMS chart which would show a zero percent chance of pregnancy...but of course no one would trust that.  I digress.  I thought I was over my fear of needles.  I guess I'm not.  You'd think that after all the blood work I've had done in the last couple years that I would be used to it by now.  I've been having monthly draws for P+7 labs for about the last year without a problem.  The fact that I hadn’t eaten anything Friday morning as instructed was probably a factor in my lightheadedness.  Fortunately I was only lightheaded briefly and didn’t pass out completely; if I had fainted, I would’ve had to have gone to the ER, and they would have cancelled the procedure.  I like to think I have a pretty awesome guardian angel watching over me.  :)  And I appreciate the prayers from all of you.

The nurse who placed my PICC line was very nice.  He said he does PICC lines all day every day, which was reassuring.  When I mentioned to him that I nearly fainted during the blood draw earlier, he asked if I had eaten anything, to which I replied that I was told not to so I didn't.  He got upset (at the person who gave me that direction) because the nothing-by-mouth order is not necessary at all for PICC line placements.  He promised to make sure I would stay conscious for the whole procedure.  :)  I asked if he would use my left arm since I spend lots of time on the computer and wanted my mouse-using arm uninhibited, but he reminded me that the anatomy on the right side gives him a straight, short route to the heart; the left side can be more challenging for him because it’s not so straight or short.  I was immediately convinced that the right side was the way to go.  ;)

First, he did an ultrasound of my upper arm to see the vein.  Then he injected anesthetic so I didn't feel anything painful during the rest of the procedure aside from a strange, uncomfortable sensation that there was something deep in my arm and shoulder.  (He was guiding a catheter through my arm vein so it reached my heart…superior vena cava if you want to be exact.)  The actual procedure part took five minutes.  I couldn't see anything he was doing—not that I wanted to look—because he had draped my arm area with a bunch of blue fabric-like paper which created a little wall blocking my view.  He did another ultrasound at the end.  Then I went for a chest x-ray to make sure the tip of the catheter he had inserted was in the correct place.  Finally they did a test infusion of the antibiotic for a half hour to make sure I didn't have a bad reaction to it.  Meanwhile they served both DH and me breakfast.  The meal looked like something you'd get at a restaurant, not typical hospital food.  At that point, DH declared that he was glad that he came along.  He likes to be fed.  :)

Three and a half hours after arrival, I left the hospital with the two “ports” (aka lumens) taped to my upper arm and covered by a cloth band that looks like a white gym sock.  I was not hooked up to any medicine at that point.

My arm with the two ports

The home health nurse came later to start the antibiotic and teach me what to do.  Each bag of antibiotic lasts for one day (it's infused continuously over 24 hours), and then I need to change the bag.  When I attach a new bag I also need to flush one port with a syringe full of saline and the other port with heparin.  The second port is there in case they need to draw any labs.  The heparin keeps that port from clotting up while it's not in use.  I don't really feel anything when I do the flushing part.  I don't see anything except the ports; there is a bandage over my skin where they are attached.  The nurse will come back sometime this week to change the dressing.  I'm glad I don't have to do that.  :)

The pump, medicine, and other supplies

In my attempts to conceal this whole arrangement from other people’s attention, I discovered that a shirt and a cardigan together are sufficient to hide the bulge that the ports create on my upper arm.  The tube running from my arm to the infusion pump is long (about 5 feet). I am able to hide it under my shirt by running it up my sleeve and having it come out by my waist.  The pump and bag of antibiotics are both kept in a pouch with a shoulder strap, which looks like a large camera bag.  I have dubbed it the ugly purse. 

The ugly purse (with a 8.5"x11" piece of paper behind it)

There is no way I can hide it under my shirt.  If I took the pump and antibiotic bag out of the pouch, I could possibly hide them if I strapped them to my abdomen and wore a bulky sweatshirt, but that’s not my typical attire when I go out in public.  I might try that if the pump had a belt clip on it, but it doesn’t.  For Mass and for running errands, I put the pump and antibiotics in my regular purse so no one would notice anything out of the ordinary (except for about an inch of clear tubing which I tried to cover with my hand).  I’m sure I looked a bit strange with my purse on my shoulder during all of Mass, but no one questioned me about it.  ;) 

Daily activities take a bit longer to do when you’re attached to a bag all the time.  Getting dressed is challenging because essentially my arm is now 5 feet longer than usual.  My arm’s range of motion isn’t quite as good as normal, but it has improved since Friday when certain movements caused shoulder pain.  When the phone rings, I can’t just jump up and get it; I have to gather all my tubing together with the bag to make sure I don’t snag it on something.  Bathing takes a lot longer because it was drilled into me by several nurses that I cannot get the PICC line wet for fear of infection.  One nurse said I could wrap my arm in plastic wrap before showering; another said no showering at all.  Since it’s just for ten days, I’m avoiding the shower and using a sponge or washcloth.  I wash my hair in the sink.  At night the bag sits on the stand right next to my pillow so there is plenty of slack in the tubing in case I roll around while I’m sleeping.  I’ve stopped sleeping on my right side because the ports dig into my arm if I lie in that position.

So far I haven’t had any bad reactions to the medicine or to the PICC line itself, aside from occasional itchiness where the tape is.

I'm glad this is only for ten days.  I’ve been thinking a lot about people who need to have PICC lines in place for months at a time.  I’m not sure everyone needs to be attached to their medicine 24 hours a day like I do (they may just have brief infusion periods and then can be “free” of the tubing and bag for most of the day) but it definitely has made me more sympathetic.

Less than a week to go!  I’m counting down the days…

Attempt #10 to get rid of TEBB

Tomorrow I start ten days of IV antibiotics to hopefully eliminate my TEBB.  I really, really hope this works.

It turned out to be a lot easier than expected to arrange everything, aside from the 12 or so phone calls.  At first I was told by one of the nurses at PPVI that most states require an in-state provider to prescribe IV antibiotics.  However, when the nurse called in the order to the home health care agency, the fact that Dr. K is out-of-state wasn't an issue at all.  That was a nice surprise.  

So tomorrow morning at 6 am I will go to the hospital to have the PICC line placed.  That was the not-so-nice surprise.  I thought I was just going to have a regular old IV, but the medicine is irritating to the vein, so they use a catheter to go deeper into the vein so it's less irritating.  (At least that's how I understood their explanation.)  I'm a little nervous about the procedure.  I can handle IVs okay, but this sounds way more invasive.  And they said I'll be there for two hours.  DH is coming along for moral support and to drive me home in case I pass out.  :)

Tomorrow afternoon the home health nurse comes to my home to start the medicine and show me what I need to do.  Once everything is hooked up, my first priority will be to try to figure out a way to cover it all up so it's as discreet as possible when going out in public.  Vain?  No, I'm not vain.  ;)

I tried not to Google all of this too much so I wouldn't cause more anxiety.  Who knows what I'm getting myself into...

The IF t-shirts are back

Last year on this day I posted a bunch of ideas I had for IF-related t-shirts.  I thought I'd do it again this year to lighten the mood and maybe even get you to smile.  :)

Wishing for greener pastures

When I interviewed for my current job, I remember my boss asking me the question, "Where do you see yourself in five years?"  I immediately thought, "I hope to be a stay-at-home mom by then."  Realizing that's not the best thing to say on a job interview, I answered with something more relevant for the situation.  Now it's almost five years later.  How I answered the question has since come true, even though I'd had other plans at the time.  I truly remember thinking that this job would just be temporary until DH got established in his job and we had kids.  I guess that could still be true but this "temporary" is lasting a lot longer than I anticipated...  ;)  My job is a good fit for me, I like what I do, and my boss is great.  But in the end, it's just a job.  It's challenging and has a positive impact on the world, but it doesn't fulfill me.  I am content with it and also with being an FCP, but I would drop it all in a second to stay at home.  (I'd even be a stay-at-home wife without kids...)  I've felt for a long time a strong call to motherhood.  I have what seems like an insatiable desire for children...lots of children.  It started before we were married, and IF certainly hasn't diminished it.  ;)  I remember spending time with a family with five small children and wondered how could that ever be enough children... How could you not want to add #6, #7, #8, etc.?  More kids meant more joyful faces and more souls for God.  Of course parenting is hard work, but what could be more fulfilling than raising souls to get to heaven?  Those were my plans.  God seems to have other plans, at least so far.  

So for the foreseeable future, my time is spent at my job...which was never in my mind supposed to be the be-all and end-all for me, but now becomes the main focus because what else is there?  The temporary, back-up plan is now the front-and-center plan.  The thought of spending the next five or more years at my job just doesn't sound all that appealing because my heart wishes it were elsewhere.  It's not a question of finding a different job; I think the one I have is great, and it fits my skills well.  (It also happens to provide very decent health insurance without which most of our IF treatments would not be possible.)  It's just that in my heart no job can compete with motherhood.  I know it doesn't help to always think the grass is greener somewhere else, especially when the chance to become a mother seems elusive right now, and there are no guarantees it will ever happen, but it's hard—so hard—to give up a dream or put it on the shelf for an unknown period of time.  I know working on being more grateful for my job (and everything else good in my life, especially my marriage) would be a better focus for now.  And maybe asking God what He wants for me today would be better than trying to look at things long term...

Beyond that, I probably need to reread the book Life Shouldn't Look Like This: Dealing with Disappointment in the Light of Faith by Dr. Gregory Popcak.  He's a Catholic psychologist who does telephone counseling.  I used to listen to his show on Catholic radio all the time.  From what I remember from the book, he talks about how to deal with big disappointments in life.  He gives brief examples from his clients, including a woman longing her whole life for motherhood, only to marry later in life and then learn she's IF.  He doesn't expand on that particular scenario—though I remember wishing he wrote a whole chapter on what advice he gave her, especially knowing that he and his wife faced fertility problems in their own marriage (miscarriage and secondary infertility)—but the whole book is written to address any major situation like that.  Other anecdotes he gives are a single person who longed to marry but never found a spouse, a woman whose husband died not long after their wedding, a man who feels stuck in a dead-end job but has to support his family, and someone whose spouse had an affair and left.  The main advice he gives is that we have to pursue meaning, intimacy, and virtue in our lives no matter what crosses we face.  The book goes into detail how to do that in order to find joy in any situation.  I definitely recommend it. (I have no incentive for writing this! haha)  Just thought I'd mention it if other IFers would find that kind of advice useful.  Time to go pull out my copy from the bookshelf...

Note:  It seems that the book I mentioned above is out of print, but there are used copies available.  Dr. Popcak has a newer book that sounds very similar called The Life God Wants You to Have: Discovering the Divine Plan When Human Plans Fail.  I haven't read that one, but it looks good.

Clomid notes

This is our second cycle with Clomid. I'm on a low dose: 25mg on CD3-5. It is definitely having an effect. My mucus this cycle was not quite as good as my normal non-Clomid cycles, but it still scored in the normal range. The big effect is on my hormone levels! For the past few cycles before Clomid, these were my P+7 results:

Estradiol 9.1 - 12.7 (normal is >12)
Progesterone 20.6 - 24.2 (normal is >13)

During my first Clomid cycle:

Estradiol 19.2
Progesterone 49.9

Wow. A little Clomid is doing big things. :)

I will admit I sorta thought I was pregnant last cycle. Oh, you post-peak symptoms that mimic early pregnancy symptoms, how you mess with my sanity. ;) I had some brief, localized abdominal pain on and off on P+8 and P+9, which I wondered if it could be implantation cramps. It was similar to Mittelschmerz. I've never had an ovarian cyst but I assumed that pain would have been worse and lasted longer. I was living in my daydream that I could be pregnant, so no one could have convinced me it was a cyst. ;) And I swear my breast tenderness was worse than previous cycles. You know how it is when you've convinced yourself you could be pregnant... Alas, it was not to be.

So while everything is looking good with my hormones, I still have that pesky TEBB. If I'm not pregnant this cycle, Dr. K is recommending 10 days of IV antibiotics (clindamycin). When I first heard this, I pictured myself attached to a pole for a week and a half. The nurse said I'd be attached to a box, not a pole, which sounds like the size of a shoe box but varies by manufacturer. (Anyone had IV antibiotics before?) A home health nurse would come to place the IV and teach me how to change the bag. It's likely that I will need to find a doctor in my state to prescribe this because most of the time they don't accept out-of-state prescriptions. There are a few NaPro medical consultants in my state, so I might have to schedule a visit with one to become an established patient. I'll probably have to call them first to make sure they are willing to prescribe IV antibiotics for TEBB before making the appointment; not all NaPro doctors are necessarily comfortable with this, even though they should be at least familiar with this particular PPVI protocol because it's been in place for a long time. The nurse said they tend to have good success with the IV antibiotic in eliminating TEBB, but I didn't ask her to quantify what "good" meant.

I did ask if it would be an option to take the antibiotic orally instead of via IV. She said too many people get C. diff infections after the oral antibiotic that they don't prescribe it that way. (C. difficile is a really bad infection...)

I asked if DH would be treated also (since an infection can be passed back and forth between spouses); he's been treated with oral antibiotics every time I've been on them. She said for this one they don't treat the husband, probably for practical purposes. They may in the future if their research indicated it, but so far they don't.

What is interesting is that the nurse, who has been at PPVI for almost a decade, said that it's really been in the last year or so that Dr. H and Dr. K have been investigating more closely the link between infection and IF, and they are realizing that they are just hitting the tip of the iceberg, so lots more research has to be done. At least future IFers will be able to benefit from their research. :)

Giveaway winner

The winner of a copy of The Infertility Companion for Catholics is...

BlessedBeLord!

For those of you who don't have the book yet, check out the other blogs on the blog tour for a chance to win.  Each blogger has a copy to give away!

Sneak peek inside "The Infertility Companion for Catholics"

I am excited to be part of the blog tour helping to spread the word about this great book!

Book description from Ave Maria Press:

"One in every six United States couples experiences infertility but Catholic couples face additional confusion, worry, and frustration as they explore the medical options available to them. Filling a major void in Catholic resources, The Infertility Companion for Catholics is the first book to address not only the medical, emotional, and spiritual dimensions of infertility, but also the particular needs of Catholic couples who desire to understand and follow Church teaching on the use of assisted reproductive technology.

Authors Angelique Ruhi-López and Carmen Santamaría offer the support and wisdom gained in their own struggles with infertility. They describe the options that Catholic couples can pursue in seeking to conceive, many of which are not ordinarily presented by the medical community. In an encouraging and non-judgmental tone, they address both husbands and wives and help them recognize the emotional impact of infertility on their relationship.

The Infertility Companion for Catholics presents a variety of spiritual resources including prayers, devotions, and the wisdom of the saints and provides suggestions for further reading of reference materials, Catholic documents, and Catholic blogs about infertility."

Now for the sneak peek!  Here is an excerpt from Chapter 7:  "Bearing the Cross:  A Spirituality of Infertility."

Saying Yes to the Cross

Before Jesus literally took up his own cross, he prayed on the Mount of Olives: “Father, if you are willing, take this cup away from me; still, not my will but yours be done” (Lk 22:42).

So often, I prayed to God to take away the cup of infertility and send us a baby.  Unlike Jesus, however, I tended to omit the “not my will but yours be done” part.  After all, wasn’t my will superior to his?

That veil of self-deception was lifted from my eyes when I started praying St. Ignatius’s Principle and Foundation, found in chapter 2. The call to be passionately indifferent is what struck me the most when I first encountered Ignatius’s Principle and Foundation while coming to terms with infertility. I was drawn to the invitation to establish order in our lives to enable the transforming love of God to penetrate us.

Being indifferent, then, is having the freedom to constantly love and serve, to go beyond our comfort zones and allow God to weave his will into our lives. A priest I know, Fr. Manuel Maza, S.J., says it’s not about making plans and then asking God to conform his plans to ours; it’s about praying, “God, give me plans.”

Just as it is important to be indifferent in discernment, it is equally important to strive for indifference in our struggle with infertility. Indifference evolves toward openness and commitment. It means putting God’s will above all else and seeking to love whatever God wants us to love. It also requires that we not prefer “riches to poverty, honor to dishonor, a long life to a short life” (SE 23). The same concept can be applied to infertility in that God calls us to not prefer sickness to health or infertility to fertility.

To be indifferent to the outcome is not to be indifferent to God’s will. To the contrary, it means to be so passionately in love with God that one says yes to his will, even if that means taking up a heavy cross. Being indifferent is a grace from God, and it is necessary to ask God for it. However, saying yes to the cross of infertility is not something that happens overnight, nor do we have to carry this cross alone. We must be patient with ourselves and realize that it is a decision we make daily, with God’s help.

I can’t say that I ever achieved the complete indifference to which we’re called, and I probably didn’t relinquish as much control as I would have liked, but prayer did help me surrender a lot (okay, some) of the control to God. Praying for the grace of indifference and making the effort to trust in God’s will is a part of the journey of infertility.

It is important to acknowledge the suffering associated with infertility, since one way of managing the pain is to face it. In time we can learn to embrace the cross—otherwise, how do we carry something if we don’t fully embrace it? It is so much hard to carry something if we are not putting all of our effort into it. Pray for the courage and strength; remember that the Bible tells us not be afraid 365 times—enough to remind us every day of the year!

As with continuous exercise, carrying our cross helps us build endurance and makes bearing the cross somewhat easier. There are some days when we feel weak and the load doesn’t seem so light, but as we accept God’s will and grow in his grace, the load doesn’t seem as heavy. It may simply be that we become used to carrying it around, but the very act of accepting and carrying the cross helps us on our journey.

SE=Spiritual Exercises by St. Ignatius

I have a copy of the book to give away!  Please leave a comment to be entered.  You are seriously going to love this book.  It's like having the best of the IF blog community in a single resource.  Consider buying it for yourself if you don't win a copy.  I am definitely going to start recommending it to my Catholic IF clients.

Visit the other blogs on the tour!