By Angie

IVF #2 Phone Consult

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My phone consult for cycle #2 was this morning with Dr. Kiltz. I went over my surgery results with him, what the oncologist had to say, and then we discussed when and my plan. Given everything and finding no endometriosis his plan is still close to the same as what we had talked about in January. Here’s a breakdown:

Lupron Trigger Protocol

  • Basline ultrasound
  • Start BCP with period in October
  • Take BCP 3 weeks and then stop
  • Wait for withdrawl bleed
  • Second baseline
  • Start stims on Day 2
  • Start with 225iu Gonal-F and 75iu Menopur
  • Go in for first scan on stim day 5
  • Around stim day 7 start ganirelix/cetrotide
  • Trigger with lupron
  • Retrieval, ICSI, freeze all

Immune treatment during FET

  • Intralipids every other week
  • Neupogen wash pre-transfer
  • Intrauterine HCG at transfer
  • Prednisone
  • Endometrial scratch

Other recommendations

  • Upping lovenox dosage to twice a day with FET
  • Continue with my ketogenic diet
  • Start taking Ovasitol®

Right now we are planning for stimming in November, as I have a speaking engagement in late October I want to not be miserable for. Anyone else with unexplained infertility with suspected implantation failure think I am missing something?

 

Third Times The Charm

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At least, that’s what the studies say. Going into fresh IVF #2, and transfer #3, I am hoping this will ring true for me.

This week I have my 2nd followup call with Dr. K to go over the new information that was found during my surgery. Right now, I am squarely back into the no-man’s land of unexplained infertility, so I am curious to see what he recommends now that endometriosis has been thrown off the table. I feel super unprepared for Fridays call, as I don’t really have any questions for him, outside of what he thinks my protocol should be and what tests he wants before I cycle again. Then of course the obligatory probing of why he thinks I should do X this time.

Anyone else from the unexplained IF camp have anything they think is a must ask question? Especially given good egg, sperm, and embryo quality previously? I’m assuming he will be more aggressive towards the immunology side of things, which I’ve already started my part in by switching to a Ketogenic diet. He’d previously mentioned introducing stronger steroids and intralipids this time, as well as doubling my Lovenox dosage to twice daily, starting before retrieval. Any other thoughts, ideas, or suggestions are more then welcome. Thanks!

 

My First Oncology Visit

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As I mentioned in my previous post, my next steps post surgery and them finding out I have papillary serous cystadenoma with borderline malignancy is that I had to be seen by oncology to start my patient relationship with them and be cleared to continue to another round of IVF. That was this past Tuesday. I met with Dr. Rose, the head of gynecological oncology at Cleveland Clinic, his fellow, and a resident.

At first it was only his fellow and his resident talking to me. The first question they asked of course is do I have children. They then went into what Dr. Falcone found during surgery, which was stage 2 borderline papillary serous cystadenoma, and what the (limited) studies say about it. Dr. Rose then came in and further explained my options.

The upside is that after some discussion I was given clearance to continue fertility treatment. I do however have to have a CT scan and CA125 bloodwork every 6 months till I am done.

The downside is that once I am done I will have to have a radical hysterectomy. What they have found with my specific tumor type is that regrowth is more likely the more lady parts you have. Since I have them all right now, regrowth is almost certain. The risk with regrowth is that there is a 30% chance that it could become ovarian cancer.

So, that’s where I am. Trying to process it all and having a hard time with it. I’m grateful he is letting me continue treatment for the time being, but it’s scary anytime a Dr would take you back to surgery if you were already done having kids. This of course also adds yet more urgency to my need to hurry up and do IVF and have success. The longer I wait the more likely it is there will be regrowth and my choice in this could be taken away. I’d really prefer being able to make the decision to get the hyst, rather then having it forced on me.

Surgical Follow-up

Today was my post-op follow up with Dr. Falcone. Who, might I mention is awesome. He has good bedside manner and is amazing at his job.

But anyway. Turns out I for sure don’t have endometriosis, as he thought and told my husband after my surgery. I do however have a rare weird disease. Because of course I do. On the plus side, I will state right now, it isn’t fatal and it isn’t cancer, so don’t start worrying about me.

05fcd63d3b9cee5618be0e97260a91d742cef482cc39cdeae80e7f6616d6bdbeIt turns out he removed tissue from my left and right pelvic sidewall, as well as my bladder peritoneum. After sending it to pathology it turns out I have papillary serous cystadenoma with borderline malignancy. Otherwise known as borerline tumors of the abdomen. The weird part is that instead of being on my ovary, which is it’s normal presentation, it was underneath my ovaries in my pelvis and bladder. If you try to look up information about it, you even get information about the ovarian form, as that’s how it presents.

So hoorah for being a weirdo I guess?

What does all of this mean? Not much. I have to go see an oncologist and get an all clear from them before I can start another round of IVF. Right now I have that appointment scheduled for next month. It also means I will have to occasionally go to the oncologist to have them keep an eye on it, as it will most likely grow back.

All in all it was ALOT more information then I thought I would get, and overall I’m happy to at least have an answer to something about my health, and a plan for managing it going forward.

Hard Thoughts About My Dad

Bill and I recently got into a pretty lengthy discussion about family dynamics that really got me thinking about my childhood in a more serious light given everything I have experienced up until now. It started based on his recent post: “The Old Flame“. We got into a discussion about the very American ideal that the manual labor generation works hard so that the next generation can go to college for something like engineering which allows the generation after that to attend college for something in the liberal arts.

1461108_568438969899126_1418399799_nI should be the liberal arts generation, or second generation even, but based on choices my Dad made, I am very much back to the manual labor generation. My Dad grew up very white collar, and made the cognitive decision to not work until I was 12 to stay at home with us as kids. But he didn’t actually do anything at home. So my Mom worked full-time at a bank as a word processor while my Dad slept in, fed us, and sort of watched us play outside. He didn’t do chores and he definitely didn’t make us dinner.

Now, don’t get me wrong. I love my Dad (I was daddies girl growing up). But I’ve really had some hard thoughts about him recently and how he has made my life harder. He chose to drop out of college and get married. He chose to not work. I love who my Dad was as a person, but if I’d been my Mom, I’d have kicked his bum ass to the curb if he didn’t get a job or at least do some housework.

This would have probably been fine anyway, had my Mom not died. My Mom was definitely the driver of the family dynamic and would have kept shit together like she always did. But then my Mom died and my Dad basically died with her.

Now, don’t get me wrong, my Dad busted his ass working 50+ hours a week after my Mom died. But he personally gave up. He went through the motions, but it was just because he had to. He did what he had to do to try and keep a roof over our heads and give us food to eat. Sometimes it wasn’t enough, but the majority of the time it was. Shit was hard. I spent time without a working shower, without heat in the winter, without a toilet that would flush on it’s own, etc. But he always tried.

2652017862_dee40554cc_oBut I’m mad. I made plenty of my own poor choices, but a lot of them I made out of sheer ignorance. I didn’t have a good role model at home, so while I was intelligent, I didn’t have the role model needed to learn the behaviors I should have. I dropped out of high school because I’d rather get high or drunk and ignore the fact that my Dad has given up on life and I have to emotionally prop him up. Why sit in class bored out of my mind, when I can just go hang out and ignore how shit my life is. Once I was 18 I had utilities in my name because my Dad couldn’t have them in his any longer and dammit I don’t want to go through another winter without heat. 

Granted, I have clawed my way out of the poverty hole I was born into, but I’m mad because it didn’t have to be that way. I’m mad that because I didn’t have the role model I needed, I am still paying for having been poor despite having worked my ass off.

And it’s hard to think about my Dad like this because I love him. I know hindsight is 20/20 and it isn’t like he did this on purpose. But it doesn’t aggravate me any less. All I can do at this point is try to learn from his mistakes and keep digging. Eventually I’ll clear the hole I’ve been in, I just want it to be before I’m too old to really enjoy it.