A card campaign

My family and I really appreciate all the thoughts and prayers for my special sister Sara over the last few months as we've grappled with first her cancer dx and now her new treatment plan. Now that her five month chemo run is beginning on Monday, my younger sister Jen came up with the idea to start a card campaign for her to help lift her spirits while she is dealing with the effects of the chemo. So my sisters and I are getting our cards together so that she gets something from us everyday and rallying as many troops as we can find to help us out.

She LOVES getting mail (she LOVES people and is an absolute doll) and we know that she would love to hear from anyone who is thinking of her and wishing her well. If you want to make her day, please send a card, note, or anything with a teddy bear on it (her favorite) to: Sara G., 2719 Keith St., Eau Claire, WI, 54701. Many many thanks! :)

It takes a village...

So I finally have a real update on what's happening with my sister Sara. For a refresher, she was dx w/fallopian tube cancer after having a hysterectomy in September. Then she had open biopsy surgery where they tested some 70 tissues in her abdomen to check for metastasis. The outcome was that is was stage 1 (contained), and grade 2 (from 1-3, moderately aggressive cells). This was the cutoff for not needing chemo, so that that was not part of the plan.

Well since then, since this type of cancer is so rare (esp. in someone who's only 40) her surgeon presented her case at a pathology conference. One of his colleagues pointed out that from the slides he thought it was grade 3 tumor cells (most aggressive) rather than 2. So then back home all the local pathologists got together, and out of the 11 of them, they split 6 (3) to 5 (2) on the grade. So the surgeon (who we all now love even more than before) reached out to leading pathologists in Boston. The two of them agreed that it was stage 3. So 3 it is.

So she starts 18 weeks (6 rounds, once every three weeks) of chemo on Jan. 31st, so it will go into May. She already got the button installed on her chest, so she won't have IVs each time. She will be on two different drugs, which I guess "counteract" each other so that the effects are somewhat less awful. But she will lose her hair. :( She will be given meds for the nausea and will be on whatever modified activity she needs to deal with the fatigue.

The chance of recurrance and mets with chemo should be low, which is good since the prognosis for fallopian tube cancer is similar, but even worse than ovarian, and I think most know how bad that is. My mom was not willing to risk this, given the change in grade.

Though apparently there is a debate going on in the family, primarily between my RN Mom and speech pathologist sister, the latter who thinks that the chemo will be too much for Sara. I agree with my mother, based on what I know, that she is much tougher than we give her credit for and did much better with her two surgeries than any of us imagined she would. So we'll see.

One step forward, two steps back...

Good news/bad news

This is how things work for us, but you know you gotta worry about the big stuff and let the other stuff slide...

Sara is getting ready to head home tonight, she is doing so well. What a trooper! All her path reports just came back fine, her other tube had a benign cyst. We are just waiting on her wash report (to see if there are any free cells that are cancerous). If that is negative, then she can avoid chemo, which is no small blessing.

My niece also got a clear today from the plastic surgeon @ Mayo that she won't need any more surgery, at least in the short term, which is also huge.

S's 3rd SA came back today. Count was amazing (as always), morphology up to 4% (but still low), motility down to 48% (this is the first time this has been an issue). Since it's too late to do much for our cycle, we confirmed that we are doing ICSI. But we are looking into supplements, in case this isn't our last cycle.

Boy, we sure do keep the doctors and surgeons busy...

Sara update

After two hours of surgery today and 70 (yes, I said 70) biopsies, Sara is recovering at the hospital. She will be there for another 3-4 days, depending on how things go. We could know something from pathology by that time or at the latest next week. The surgeon said the remaining tube looked like the first (i.e. cancerous). Thanks for all your thoughts and prayers.

T&P request for my sister

Today is her big surgery day. Since fallopian tube cancer is treated like ovarian cancer, it needs to be staged in what seems like a very medieval way to me. She will have open surgery, from her sternum to her pelvis, where they will biopsy all tissues in her abdomen to see if there are any cancer cells anywhere. This will determine her treatment. Any and all thoughts and prayers are much appreciated.

And the hits keep coming...

I've been thinking about putting together a post on India, which I may still do. But I've little time to look backwards given the rate at which things are happening to us right now. S returned home tonight from 20 hours on a plane while I was at class and he's already at urgent care. In addition to his traveler's diarrhea (which thankfully I got antibiotics for, which I used to kick mine), he also has some viral/flu infection (though we've already had our flu shots) and pink eye. The poor guy. And he has to drive 3 1/2 hours each way to and from Iowa tomorrow for work.

I talked to my mom tonight before class, and she let me know that my eldest sister Sara, who is cognitively disabled and lives with her, was found to have fallopian tube cancer (which is extremely rare) when they did her recent hysterectomy. She is only 40, but as she won't be having children and was having lots of pain, the Dr. thought it was time. She will have to have many more tests, and another (this time open rather than lap) surgery. But we are all just hoping that she doesn't need chemo. I can't imagine. My mom waited to tell me because of FIL's sudden death and our trip.

So if I'm supposed to not focus on not being able to have a child, having a sibling diagnosed with a serious disease, losing a parent, and having two terminal grandparents is certainly one way to put things in perspective and at the same time make you question how so many bad things could all happen at once.

The Trust Hormone and A Life without Fear

There was an interesting story on NPR this weekend on Williams Syndrome called, When the 'Trust Hormone' is Out of Balance. My eldest sister Sara, who is now 40, was born with Williams Syndrome and since it is quite rare, it is always interesting when it gets picked up in the media.

As a gene deletion/chromosomal condition from conception, there is no "cure", but this is the first time I've heard it characterized as having the same affects (though not stated as being influenced by) having too much oxytocin. Today's installation is called A Life without Fear. Last week the series talked about those w/WS lacking racial bias.

Also,
NPR story on WS and language from 7/06

NPR story on WS and music from 10/06

Nice to see that over the last four years they've dropped their description of those w/WS as "elf-like"... Hope there is increasing depth to the series.