Monday, June 30, 2014

Sunflowers and Signs

So I'm beginning to be optimistic and that scares me.. but maybe there are signs out there.
During my prep for my FET last September there was a lone sunflower. Though it was small, it grew out of a debris field. Since my group name was 'September Sunflowers' I thought it was a fitting sign of things to come. That sunflower died with the confirmation of my chemical pregnancy.


The next week another sunflower popped up in the rock yard, and I thought.. maybe this means I should keep trying. Keep in mind, my chemical was confirmed on the anniversary of my mother's death. My mom LOVED sunflowers. Her entire kitchen was sunflowers, her favorite perfume was Sunflowers. They always remind me of my mom. So I thought maybe she was telling me not to give up.


So what does that mean? Well- in the exact same spot as my 'do not give up' sunflower is another sunflower. Look! It's flipping huge- like a really huge sunflower.. the kind that stay for a while. I'm so reading into this too much- but how could this not be a sign? Even if its just from my mom since my beta is around her birthday.

Sunday, June 29, 2014

Results and some thoughts

I went for scans today- but first I'll talk about this quote I saw yesterday and it really sparked my interest- especially since it's from Grey's. (I'll be using it next week for IDOB).




This really got me thinking. I have been in both places: Clearly the heartache from infertility, but also not knowing what the next step is going to be. In the world of IF, the "plan" is the key. So I'm giving huge hugs out to any ladies who are not sure what they want next because I believe they need the most hugs.

And now my results:
3 follicles! Say what? Yup- I got another one. Not too surprising since the last scan required some pushing on my ovary just to see the two. But they are getting kinda big.. 19-22. Remember the only proven good egg was triggered at 18 and we know it had no SERs- so being that big kinda worries me a little. My RE commented "Wow- that was fast" Because I know he doesn't like to see me over 20- but he did know that I normally go pretty fast without meds- or he would if he memorized my file.. ha ha. 

Anywho- they are all on the left side! Yay!!! Remember tilt ute- all fluid go toward the left- so I'm thinking this might be the IUI where I actually get my 10% chance of it working. Woohoo! 

So in other good news- I'm scheduled for the first appointment so I will most definitely be at work/school on time both Monday and Tuesday. Damn it, I am going to get there to claim an air conditioned room!!

Keeping it positive because we all know that's how the pee stick should be!! 

Saturday, June 28, 2014

Drugs

So every weekend I fill up my not-so-little pill cases for the week. Lately it has been a struggle to get everything in. Luckily I stopped the estrogen last week, the antibiotic yesterday and will stop the letrozole tomorrow (hopefully). But I will also be adding one trigger shot and one booster shot, more lovenox and progesterone suppositories. So I need to make a schedule for all these drugs- I have work from 9am - 11am, so I want to make sure I don't need to take anything during my workday.


**My Drug Schedule**

4 a.m. - Levothyroxine (on empty stomach & can't eat for 90 minutes after ; take 4 hours before calcium or iron or antacids)
5:30 a.m.- Progesterone (vaginal)
6 a.m. - DHEA, Folgard, Vit. D, B12, CoQ10, Prednisone & Lovenox injection (& food)
8:30 a.m. - Prenatal Vitamin (must be 2 hours after eating and 1 hour before eating & not with calcium)
11:30 a.m.- Progesterone (vaginal) and aspirin/calcium combo pill (& food)
5:30 p.m.- Progesterone (vaginal) and CoQ10 gummies
6-7 pm - Metformin (with dinner) and Lovenox injection
11:30 p.m. - Progesterone (vaginal) and Cabergoline (Tuesdays and Fridays only)

I'm glad I did this- because I think I can fit in an antacid during the evenings. My tummy has been feeling pretty crappy with all of these pills.

Even with only 2 hours of work 4 days a week (and my 3 hour commute), I never feel like I've done nothing because these drugs seem to take up a good majority of my day.

Friday, June 27, 2014

Scan Results

So right now I have 2 follicles around 15mm on my left side. At first I thought- wow, I had 2 last month and didn't risk quality with all these drugs- but nah.. we're going to be positive.
Know why? Because the doctor who did my HSG said every time she squirted in the dye it went straight to the left tube- she had a really hard time and had to put a lot more dye than she wanted to get it into my right tube. (She didn't want to put a lot in because of the allergy and my wee little ute)
So I thought- imagine how crazed I'd be if I had all my good follicles on my right side? I'd be a lunatic. I'd probably have my RE on the IUI day and I'd try to explain to him why it might be a good idea to do IUI in some weird pose... but I don't have that.
All my follicles are on my good side. So this is a good thing. So I am happy about it. I think I can finally count this as one 'good' chance with IUI.
Oh, and it will be Monday & Tuesday or Tuesday & Wednesday! From here on out, only positive thinking.

Some *Good* Things

In an effort to keep my blog from being an all out complaint board- let me share some good things.


  • School's out and I got a Summer School job. Just enough money and hours to allow me to actually enjoy the summer.
  • I joined a book club! Yay! So happy to be able to do something productive!! And I never read enough.
  • Our contract at work was PASSED! I will have enough money for a donor egg cycle with my retro-check. (I know better than to think I'll get it before October)
  • Which means- I got a raise. About time, about time..
  • My tuition reimbursement is more money than the Disney vacation I am going on with that money. You know what that means? I may see a Dooney & Burke Disney purse in my future! Or maybe one of those underground tours... 
  • I've finally started doing my own sub-q injections! (3.5 years later) And I think I'm doing very well. See.. DH did his 3 days ago and that's a nasty bruise. Mine are all super light.
So I have to leave for the RE now. Hopefully I'll have more good things to say later.

Thursday, June 26, 2014

When is Enough Enough? (Edited)

If you haven't noticed- I'm a pretty anxious person and I worry more than most. I also hate making decisions and hate confrontation even more.
But right now it has come to the point where something with my RE has to change. I feel so incredibly sad about this since I really liked him, referred him to others, and thought he was a great doctor. I am just concerned I am not getting the best possible care. DH is writing a letter to him explaining all the issues we've had and seeing how we can change it. We are thinking about giving up on my nurse. She's a ditz, but my RE asked me to give her another try...that was over a year ago.
At this point I feel like I'm supervising her.

Examples:

  • I emailed her before starting my IUIs (which we planned for since January) asking if there was any paperwork I needed to fill out. And I had 4 packets to complete and needed updated bloodwork for me and DH.
  • On CD1- after I emailed her I had CD1 of my super predictable cycle- I had to remind her to order my drugs.  And they needed preauthorization that was never done- so I had to drive to the pharmacy twice to get them. (It's a specialty pharmacy about 90 minutes from home- so not convenient)
  • And since she waited until that day, another RE ordered my drugs. So, it was the wrong trigger and wrong needles since I typically take menopur IM.
  • After my CD3 monitoring she did not call until almost 4pm to tell me I shouldn't follow the plan. By that point I had already taken the drug for the day. (ok- maybe we share equal blame here- from now on I'm waiting until being told to take meds)
  • When I asked about the HSG she wrote back to take more estrogen and she would order doxy for the procedure. I had to remind her that she needed to order the estrogen and that I cannot take doxy so she needed to order a z-pak instead. (I get that she might not remember or think to read my chart about the doxy- but if you tell me to take a drug, shouldn't you ask me if I need it ordered?)
  • When I told her I was nervous about taking the estrogen she responded that I shouldn't worry because the estrogen would already do it's thing. Does she not have a clue that estrogen caused my eggs to be rotten my last medicated IVF cycle. What a shitty thing to say... I know not a huge deal...
  • After talking about the HSG for days, having it scheduled, I still had to remind her I needed a script for it.
  • So after the whole weekend with the 'plan' changing and I missed it in an email, I was told my nurse would email on Tuesday. So I find out Tuesday that my plan changed again and to start one of the drugs that night. That was it. Nothing else.
  • Wednesday- I wait around to see if my nurse writes again since I am taking more than one drug this cycle. I am also hoping DH would handle it, since I didn't want to be involved, but I was free and he was having a rough day. So I wait until the last minute to call her. She says she was on her way out the door and I ask when to start my other drug. She tells me I start tonight. (How the fuck was I supposed to know that? Were you going to call me? Why do I need to double check this? Why?!?) And then tells me that the plan was changed again (And I knew that how?) So now in an effort to not feel blindsided, I ask when I come back in. (Also, I'm trying to coordinate an appt with the RI, so any advance notice helps). She tells me I am still scheduled to come back in on July 1st.  So she knows my plan changed and everything else was moved up 4 days and tells me to take these drugs for a full week unmonitored. Completely dangerous and would cause me to lose the whole cycle. So I had to tell her that it seemed like an awfully long time to be on menopur without monitoring. (Like HELLO?? Are you sure you work in a fertility clinic? And as a nurse?) So she gets an idea that maybe it should be moved to 2 days after starting the menopur, like the original plan but she wasn't sure if that would be ok, but she'd check. 
I guess the part that really ticks me off is this responsibility I feel. If I am not looking out for me, who will? I know from my own research and asking questions to my RE that the letrozole can only be taken for 5 days. But would my nurse have told me to stop if day 5 is before a weekend? And she sometimes emails at 11pm on Fridays- I don't think any patient should be tethered to the email that late. It's kinda crazy. I will be asking my RE when to stop on Friday. The part that really sucks is I really need to step back mentally, I am way too involved. I don't want to research any protocols, I just want to have faith in the plan- but with all of this- I feel like I can't do that. I feel like something will go wrong.

Like last December when a nurse called and told DH trigger was on Saturday, and then called me and said it was on Sunday. And I even called the on-call RE to confirm which one. He said my chart said Sunday- so I did my first IUI 12 hours after trigger- and not 36, which is the norm. And I did question an RE.. I can't keep wasting this expensive donor sperm.. I keep saying I just want 2 IUIs to fail before I move onto Donor Eggs, but is it so hard for me to expect to nothing will go wrong and I might get the whooping 10% chance I'm actually supposed to have? 

So this all happened yesterday.. right before therapy. DH is fuming mad. He wants to write the founders, the doctor and the nurse. And I'm sure he will. He wants daily phone calls. I preferred e-mails and to know what to expect a few days in advance (like a real plan). So we need to square that away. My therapist was also fuming mad. She knows I'm kinda done with advocating for myself. I didn't think it would feel like a full-time job.. 

Like I said before, I don't like confrontation- but enough is enough, right?.. I need to step back and know someone has my best interests and some knowledge about IF. I know DH has my best interest, but he wouldn't know about the monitoring or how long you should take drugs or any of that. I'm not even sure he would know to ask for a script for tests. 

We are also pretty upset with the RE for not calling me last week- and I feel like this could be avoided if I was in the loop- but whatever. That's kinda how I feel..

(Edited to add)I forgot to mention- DH is so upset and he keeps saying we should threaten to leave. He doesn't get it. They are wildly successful clinic and we have uterine problems, egg problems, and zero sperm. Other clinics may not allow me to use my eggs, or have really crappy results, or a horrible lab. Even though I'm not confrontational, I'm more scared they would drop us as a patient. I know that doesn't mean I deserve less care- I get that. And I truly hope they aren't putting all their effort into patients who really have a chance, and I'm a pity patient. I don't even want to think about that because I am hoping no one is thinking about me that way. I just want to have less stress and responsibilities. 

HSG

So I had my HSG on Tuesday. Luckily my results came back normal (woohoo!) but it was an awkward and long test for me.

I'm not exactly sure why but I could not relax at all during the test. I pushed the speculum out twice (I  have rockstar kegel muscles) and that was after I relaxed enough for her to put it in.
I must say the doctor that did the procedure was really helpful. She was worried about my shellfish allergy but I told her I had contrast before and it was never a problem. Then she informed me that all of the tests I've had before didn't actually contain iodine. Say what? Why on Earth did they always ask me if I was allergic before the test? And why did they say I was fine afterward?

So I had to hang out after the test and be sure I didn't have any problems. It just so happened I was already on prednisone for my inflammation issues- and that is the typically pre-treatment if you do have an allergy. So my nurse had me hang out in her station while she helped other patients. Of course, I immediately had an itch on my leg and I'm thinking this is only in my head but I'm afraid to scratch it, because then it will be itchy and its not a hive. Oh, the conversations I had with myself were pretty hysterical that day. Because then I thought my throat feels tight. But maybe I'm thirsty? Or dehydrated? Phlegmy? Now in hindsight- I drank 3 bottles of water before the procedure and had been going very hydrated all day- but it was a good thought.  I asked for water, thinking that would solve everything. Nah- it was definitely getting tighter.

So they started a line- just in case- and gave me some benedryl and a bed.. And then I needed to find someone to get dropped off at the hospital to drive my car and me home. Luckily, my sister was allowed to drive by now after her surgery and her bf was with her and could drop her off. Whew! I told DH and we figured we could go out to dinner and just drop my sister off since she lives between the hospital and my house. (Of course the hospital was 40 miles north of my house)

And the benedryl bursted open in my throat (yuck!) probably because it was swollen. So I'm just relaxing in the bed and I noticed I was having a palpitation. They are becoming more common these days and I look at the monitor and its silently alarming because my pulse is less than 50. I was thinking of taking a nap since I had to be there a little bit and I was getting kind of sleepy, but then my pulse got even lower- so I figured it was better to stay awake. And then the doctor comes in and says I can go home soon- and she looks at the monitor...  She wanted to send me to my regular doctor, but I told her my pulse is always low- which it is, but I'm normally only on one of those monitors after anesthesia, so I thought it was that. She kinda bought that and saw that my pulse didn't really change since I was on the monitor and I have perfect blood pressure. But she did say that I need to make a cardiologist appointment because it can be a real problem when I become pregnant. (It's been so long since I've heard that... my lingo is 'if' I become pregnant.. it really took me back, but anyways..) So I'm adding that to my list of crap to do for the summer. Oh yeah- and I need to see an allergist about getting an EpiPen.

Here is my lovely abnormally tiny uterus...


Monday, June 23, 2014

Lucky for the Bruises

So today was a big day in our house- DH got to draw my blood.
He always talks about how the phlebotomist stinks because he has to dig for my vein (it's a roller) or how much they marked my arm. Well I could tell he was super nervous- heck I was pretty nervous.
My old faithful was blown on Friday and my back up vein, which is extra rolly, also had a decent bruise from Saturday.
Last night he surveyed the area and found his spot. I woke him up early this morning and got everything ready. I needed 4 massive (think cigar holder) vials filled. It didn't start off so good. He pulled the tourniquet way too fast...
Not only did I get this awesome bruise, my entire arm turned blue while he looked for a vein. The one he saw last night was really 2.. Call me crazy- but I can see a whole lot of veins in this picture.. I am the whitest white girl in America..

So- I told him that he should go above the blown vein on Old Faithful- and he gently moved the tourniquet and went there. And he had to dig forever (a full minute)... He finally agreed that my veins really do roll... 
Oh well, as you can see- I got a cool BandAid- and it matched my nails and my dress.. Very excited that my nails will be matching all my BandAids this cycle- Go Sully Colors!!

Saturday, June 21, 2014

Oh Drama, Leave me alone!

So I went in for baseline today. My ovaries were very much like myself- exceptionally quiet- and exactly what my RE wanted (not sure about the me part- but I wouldn't doubt it). Hubby almost made it to monitoring- if I knew he was so close I would have waited for him. But he was able to go out to breakfast after my appointment, just like we used to. It was very nice- and we got a chance to catch up a little and talk about other things. Sounds almost perfect?                                                                
But then my clinic calls me- the nurse tells me that I already have my protocol and to follow it. I was confused- I didn't have a protocol set in stone, it was something the RE said might change today based on my bloodwork. I will be honest, I didn't like the protocol she was reading- but I asked when I needed to come back and she said I don't. Umm... So I told her I would email my nurse and I went to ask what my levels were and she hung up on me.
I went upstairs and found the e-mail I overlooked on Thursday. (She sent 3 emails, a voicemail and we spoke twice- I thought I was up to date). I wasn't going back until CD14- me? who normally triggers early, even if I don't have measurable follicles at baseline. That is a crazy long time- So I was upset and the phone rings.
It's another nurse- who just emailed my RE to confirm my plan. OMG- I didn't need it confirmed- I needed to find it- ugh! and he changed it in the 4 minutes it took for me to look it over. He stopped the estrogen earlier and started menopur a few days earlier.
When we met for our last appointment he said I should be monitored 2 days after the menopur was added (CD6). Then it was changed to CD10- but now it's CD7. And the estrogen was going to be until CD6- but now I am stopping on CD4. I am hoping I will come in earlier- but if they honestly didn't monitor me on menopur for 6 days- I wouldn't be surprised.
The nurse was also not very nice- and said my nurse would email me on Tuesday. Great- but I still don't have the script for the HSG I'm having done on Tuesday.

So I think that was it for me- I'm over this cycle. I'm going to go through the motions- even travel to flipping Chicago for testing- and pay oodles of $$ to ship my blood out there but I've decided that the hubby can deal with everything else. I'll worry about Chicago and he can deal with the nurses and the RE in NJ.

Thursday, June 19, 2014

Today Sucks.. Let Me Count the Ways

Every have such a bad day you're afraid to complain because there are more hours in the day- which means there are more things could happen? Yup.. that's where I am.
So lets recap

1. I got my period today. Not such a bad thing- but holy cramps! I even took tylenol- and I hate taking more pills.

2. Work sucked. I had 1,000 things to do and teachers kept leaving me kids that were not my responsibility. And I am so behind in my classroom and grading- but everyone else is all set.

3. It took over 7 phone calls, 2 days, and about 3 hours to schedule an HSG. I did not think this was too big a deal. I tried calling yesterday to be ahead of the game. But the scheduling dept didn't call me back. I called 2x today and they didn't call me. I told my nurse and told her I would try somewhere else. Other places were booked.. I finally tried a hospital on the way to work and they were available. I told my nurse and she told me that I can't go there because patients complain it's very painful there and they do not do it correctly and it may need to be done over. OK- so that's a good reason. I finally got a larger list of places approved to call- but at that point every place was closed. Then at 6:30 the original place I was trying to get into called me.. so that was resolved- but it didn't help the day. I mean- those 7 phone calls didn't even include the calls and emails to my nurse.

4. My RE didn't call me back. My therapist said I should write him and have him call me so I can discuss my questions. Clearly I have anxiety issues with this upcoming cycle. I admit, I hate being clueless, feeling out of the loop and no clue what is going on. Only thing is, he didn't call me. He give me a bullshit response that was vague. Said we could delay based on CD3 bloodwork. Delay the IUI? Taking the estrogen? The HSG? I wasn't sure because it was a vague e-mail. and that lead into...

5. DH and I kinda had a tiff. I asked him about RE's email and he said it wasn't confusing at all. but he couldn't answer that question either. So I was clearly hormonal and pissy and DH said he would write him and ask him all the questions. Well- he wasn't kidding.. He asked why we needed an HSG, what it does, what the estrogen does and a whole bunch of questions that well- I already knew the answer to. (But I am grateful that he is trying)

6. DH can't come to monitoring on Saturday. I really feel overwhelmed and it's hard to keep doing this alone.

7. My sister had surgery today. Clearly, more sucky for her. But since she stays with my aunt and I don't speak to my aunt, I couldn't go to. I kept my phone on all day hoping to hear from her or the doctor. Luckily, she is doing ok and is home resting.

8. The dog stole one of my toys. Not a big deal, but it was one with those stupid plastic beans... Ugh! I see more vacuuming in my future.

9. My friend texted me from school and completely reminded me I never filed for financial aid! Ugh! That was due months ago. I'll have to do that this weekend.

10. I can't send my bloodwork to Dr. KK because it has to be drawn on CD 1-3 and has to be shipped via FedEx by Thursday. Umm.. I got my period at noon. How the heck with everything else was I going to get DH to draw my blood (I didn't even have the tubes or packing slips) and out in 4 hours. Really?? Guess that isn't happening this cycle.

11. My friend from school told me that we can't take out extra money in our financial aid anymore. I know it may seem wrong- but after my mom's death and paying for the funeral, we were relying on the extra from financial aid or my sister paying us back for half the funeral in order to pay for our next IVF cycle. Or I could use the fake money I got from my nonexistent contract - Wishing for my retro check to come soon and a contract signed even sooner.

I don't know- maybe this is how it's supposed to go. My stomach had been killing me with all the pills and I've been thinking that maybe I need to look into having surgery on my stomach before having a baby. I mean- if we don't have the money and need to wait years- what else can I do.. but I can't help but feel like I've wasted all my time with Dr. KK if I have to start over again.

How can I be on this road for 5 years and be in the same spot as I began, except with even more crap buried on top of me?

Sunday, June 1, 2014

Part IV (A New Day- Not a New Perspective)

I started writing this last night and I got so mad that the tears were pouring down my face.

I went and hid under the covers and DH let me just sleep it out. I woke up this morning and tried to be better.  I tried to think maybe DH is right- shut up and let the Dr do his thing... but I know my therapist is against that. And I'm so tempted to text her and let her know I'm having a super hard time. But she has other Dr. M patients and I often wonder if she has way more reason to doubt him than I do.  Don't get me wrong- if this was another doctor I couldn't even have these open conversations- he respects me enough to make sure I understand... but for me the more I know, the more I question..

So here is where I am today... I'm going to list everything I know.. most of which is from my doctor.

Letrazole is limiting the estrogen but does this through a different mechanism than clomid.  Letrazole is a aromatase inhibitor.  Aromatase is an enzyme that is needed to synthesize estrogen.  Letrazole blocks that enzyme which therefore lowers estrogen level.  Clomid is an estrogen antagonist, which means it competes with estrogen so receptors do not see as much estrogen which in turn tricks your brain into thinking there is not enough estrogen around which causes more FSH and LH to be released from brain which then stimulates ovaries. 

This is why we are doing this protocol. (Discussed down reg low dose stim with letrazole in hopes of improving egg quality and lowering impact of SER inclusions) His notes in my file

So YES- I had too much FSH and an early LH surge.. so clearly I need to opposite protocol. (WTF)
But estrogen priming is what is recommended for patients with a low AMH and Lupron for those with normal AMH because Lupron suppresses follicles.

This is what I read:
Lupron (leuprolide acetate) is often prescribed for endometriosis because it dramatically lowers estrogen levels by regulating the body's production of follicle stimulating hormone (FSH) and luteinizing hormone (LH). The uterine lining is highly dependent upon estrogen for growth.

That kind of sounds like where I was 2 days ago.. High estrogen and FSH and must have been a high LH if I was about to ovulate since you needed a surge..
Maybe Dr. M didn't see my AMH quadrupled? Do I tell him that?? He order the test- he should know right? 
I really don't want to tell him what to do- I have no right to do that. But I get so emotionally wrapped up into this that I know it sounds like I'm questioning everything.


Trust me- I have parents that try and tell me how to do things- psychologists that write me about positive reinforcement- like of course I know that... I am a teacher.. Graduate degree in School Psych.. Taking ABA courses (probably more than you)..  I don't want to be that person... 

... but maybe I know a little too much....