Monday, July 21, 2008

Breathe In, Breathe Out

So, I guess I might as well start by getting the stuff about my sister off my chest. It's long, so bear with me.

My DH and I discovered we were going to have trouble having a baby in the fall of 2006. We saw an RE, had all the testing done, and then I had to have emergency surgery for an ulcer, and that kind of put everything on hold. In January 2007, I got a new job and we went under my new insurance. Neither my job, nor my DH's job covered an IF treatments. So we found a great place that offered Shared Risk Programs. And it was also once of the best, if not THE best, RE in New Jersey. So we made an appt.

I ended up sharing my issues with my sister. DH and I had decided not to tell anyone, we just didn't want the pressure of everyone in our families knowing. My sister ALWAYS has said that she does not want kids. She loved living near NYC, going out all the time, traveling, and she just didn't want to give up that lifestyle.

Well, when I told her about our issues, she shared that her and her husband had also been trying for almost a year, and she wanted to know which doctor I was using, because she was going to call them also.

I was a little upset. I'm just being honest here. I didn't feel great about knowing that we would be going through infertility together. I was scared to death of her getting pregnant, at the same time that I didn't get pregnant. It just seemed too close. I wished that I hadn't told her.

So fast forward. August 2007 we both start to cycle. I was on a short protocol, so on Day 3, I immediately started stims. My sis on the other hand was on a longer protocol where she did a month of BCP first. So mid August, I'm getting my retrieval, and she is still doing BCP.

I lied to my family though. I told them I was on the same protocol as my sister, so when I was trasferring two blasts in, my family thought I was on BCPs planning for everything to happen the next month.

Well, it ended with me getting pregnant with the twins. Yeah. Not such a happy ending for my sister. She ended up with OHSS, 44 eggs, and a stay in the hospital because of all the fluid she retained. The doctors did a "freeze all" on her embies, and only 1 was able to be frozen.

She did a frozen cycle with her single totsicle in December, and got a BFP. Her betas did not double correctly. It was a royal pain in the ass, because her HCG kept going up. They saw a sac, and a fetal pole, but never a heartbeat. I think it was around 8 weeks that she ended up having a D&C.

My sister is great, and was super supportive throughout my whole pregnancy, although I'm sure it wasn't easy. She planned my entire shower, and did just an amazing job. So when I gave birth in April, she was over all the time. So I knew something was kind of odd when they were about 2 weeks old and I didn't hear from her for like a week. She ended up calling me and telling me she did another fresh cycle, this time there were 38 eggs, and she got OHSS again. She had to go have a needle put into her uterus to drain all the fluid. She was out of work for almost 2 weeks, and was at the RE for hours everyday hooked up to an IV. They did another freeze all, but earlier, so there were like 13 frozen.

My sister did a few FETs, and one time she had another positive, only to have non-doubling betas and another D&C. The other time, it was just negative.

Finally she decided it was time to do another fresh cycle. She discussed with her RE, and he said he think he came up with a protocol that would stop her from overstimulating. By this time, she was 36. Our RE requires a yearly mammogram for anyone older than 35 who is going through treatment.

She went for her mammogram, and the doctor called her that night to say that there was something concerning on the film, and he wanted her to see a breast specialist. She went to see him a few days later, and he said he was 90% sure it was nothing, but they needed to go in and biopsy an area where there was something. She had the biopsy done, and about a week later got a call that it was non-cancerous, and to come in for a follow up meeting a week later.

At that follow up, the doctor said he saw something ELSE concerning, so he wanted to go in and get more tissue, but this time they would knock her out. She got the results while on vacation on July 3rd. The cells were cancerous.

My sis went with my mom and her husband a week later to meet with the doctor/breast surgeon. He gave her three options:

1. A lumpectomy where they take out the breast tissue where the cancer is, and tissue from the surrounding area. She would need to follow this up with radiation treatment, and there is a pill she would have to take for 5 years.

2. A mastectomy where they would completely remove the infected breast, and reconstructive surgery for an implant. She wouldn't need any follow up radiation or chemo.

3. A bi-mastectomy where they would remove both breasts, and reconstructive surgery for both. Again, no chemo or radiation.

Another thing they do is immediately during surgery (regardless of which one she has) they take a sample of your lymph nodes, and send them to the lab to see if they are infected. If they are, they take out a bunch of them, and then she will have to do chemo either way.

Also, she was told that if she had any kind of treatment (chemo/radiation) she would have to put of TTC for 5 years. Which would put her at 42. This is when my mom said my sister really lost it. She just started crying and couldn't stop, saying "Im never going to be a mom". To tell you that this broke my heart would be a complete understatement.

So this was the surgeon who told her this. We have a history of breast cancer in my family, my maternal grandmother died of it. So my sister was sent to a genetic counselor for testing to see if she carries the gene that predisposes her to breast cancer. If she does, that may push her more towards the mastectomy, versus the lumpectomy.

Ugh. So then she met with the oncologist. And she dittoed most of what the surgeon said, except she told my sister that she probably would be going through chemo regardless. My sister's cancer currently measures at something like .9 mm, and the doctor said if it's 1 mm or greater, she would have to go through chemo. So now she feels like she will be going through chemo regardless, and it completely and utterly overwhelmed.

My heart is just breaking. Right now she is in fact gathering mode. She has met with many surgeons, oncologists, and plastic surgeons. She is actually meeting with doctors at Sloan-Kettering in NYC today. She is going to hear the results of her genetic testing on Aug 5th at her doctors appt. Depending on the results, I will probably have to go get tested as well. I'm also going to get my first ever mammogram on Monday.

So, in the midst of all this, she met with her RE. He said he has dealt with other patients where this has happened in the past. Depending on the type of treatment, it may not have to be 5 years, could be closer to 3. But he said either way, they will do a fresh cycle and freeze after she has her surgery, but before she starts her treatment.

This is where I come in. My sister hasn't had the greatest luck with her frozen cycles. So I offered to be a surrogate. I offered for her to go through the cycle, and instead of freezing all, transfer the best into me.

So, that's the deal. I'm excited to do any little bit for her that I can. My DH is amazing, and 100% on board. He knows that things might get hectic in our house should it work, he would have to do a bit more with our kids, especially the bigger I get. But we are both willing to make any sacrifice we can for my sister and her husband.

Now we basically just have to wait for her to make her decision about treatment, and go from there.
If you've made it this far, thank you for reading. It's so much to take in, and this is such a good place for me to talk about it, and get feedback, but not have every Tom, Dick and Harry that read the twins site read about it.

It's going to be a long journey. And if I already feel this drained, I can only imagine how she must feel.

Caba

7 comments:

xavier2001 said...

Wow, that's a LOT to take in. First off I am so so sorry that you sister has to deal with this in the first place, it just sucks, there is no other word for it. And I'm sorry for the pain you have been through too, through watching your sister and having the new fear of possibly having the breast cancer gene.

I think what you are doing is amazing, and what a gift that you are giving to your sister, whether it works out or not.

Lots of hugs!!

E said...

Oh my god - how horrible for you and your sister and the rest of your family. I'll be thinking of you all.

It's amazing that you've offered to be a surrogate. What an incredible gift. I hope you'll keep us up to date on the progress of it all.

On a lighter note - I am so with you on the tv. It's a terrible addiction, but breastfeeding is giving me loads of time to catch up on the crapola. Thanks for sharing your new space!

Carrie27 said...

You are amazing for offering to be a surrogate to your sister. I know that I would do the same if I were in your shoes.

I know your sister has a lot on her plate, but you'll be there through it all to help support her and keep her strong and determined.

Karen said...

Wow. That IS a lot to take in, and such a hard thing for your sister to digest. Could the cancer have anything to do with your sister's response to the protocol? (Just curious)

You are amazing. Really. There are few more self-less acts than offering to be a surrogate.

I'm sniffling and, okay I admit it, crying a little (a lot) over here. I wish there were something I could do for you from over here, but just know that you and your sister and your family are in my thoughts and prayers.

Topcat said...

Oh, Caba. My heart breaks too ... for all of you, what a terrible shock. CANCER SUCKS.

It's so wonderful, you deciding to be a carrier for her.

Wow. There's no way through it but through it ... and, in a strange way, it does bring its own gifts. The shock wears off, and life gets bearable.

Thinking of you xoxoxox

Lollipop Goldstein said...

Sorry--getting caught up on Reader. What an amazing gift to knit you two even closer together. I'm sending so many good thoughts to the two of you that the surrogacy works and the surgery works and that...well...that everything works and a few years from now, the cousins are all playing together and you have this moment where you remember back to today and how scary everything was. That's my wish.

Aimee said...

OMG... my heart just breaks for your sis. It's just not fair. I think you're a wonderful sis for offering to be her surrogate. I'm keeping my fingers croosed that there will be a happy ended in all of this. I'm picturing your happy & healhy sis holding her baby(ies) Your sis is in my thoughts & prayers.