Monday, June 03, 2013

Why I've been (relatively) quiet this year

I've been meaning for a while to write this post to let everyone know what's been going on with me (with us)--perhaps some of you have seen on Facebook or Twitter some updates or have heard bits and pieces from me or others, but I thought it would easiest to give an update all at once.

So, here's the deal:

Basically, soon after our wedding, Greg hurt his back and ribs (or so he thought) fairly severely while playing golf. After about two months, when he wasn't getting better, he went to the doctor who took an X-Ray and said that he was fine, that it was a muscle injury, and that he could try physical therapy, which he did for a few more months. Nothing was quite working, and at the end of January a large bruise showed up under his ribs on the left side. He went back to the doctor who ordered a CT scan, and they discovered what they thought at the time was a large kidney mass.

He went through surgery on February 12 to have the mass and a kidney removed. The surgery was successful, although he ended up losing his spleen as well (silver lining--you can live a relatively normal life without a spleen and just one kidney). The mass was extremely large--it was described by the surgeon as being the size of a football. (!!) Another said it was the size of Greg's head, another said it was the size of a small watermelon! No doubt it had been growing without him knowing for many years.

The pathology report came back a few weeks later, and we were told it was a rare form of cancer, a type of sarcoma. His type is diagnosed for just 1-3 people per million each year. Nobody knows what causes it. (I always knew Greg was one in a million!)

Again, the surgery was successful in that as far as we can all tell, they got it all out (thank you Dr. Birns)--so far, there is no sign of remaining cancer cells, nor that it's spread. But sarcomas tend to come back, so he's going through 4-5 months of chemo to try to lower the chances of recurrence. He started his third round today--in fact, I'm posting this from his treatment room.

We've definitely had some complications and set-backs along the way--a long recovery from the initial surgery, plus an ER visit and multiple hospital stays in-between. But we've been staying in overall good spirits, all things considered. Greg has been amazingly strong through this, and we've had wonderful support from friends and family and colleagues.

I don't plan to blog about this much if at all beyond this post, but because everything that's happened has caused such changes and upheaval in our lives, I wanted to post this update. Life has slowly been settling into what we're calling our "new normal"--I'm getting back to a somewhat regular work schedule again after a very erratic few months, although of course I still have a lot of catching up to do and am working from home as needed. Is it really June already?!

I want to thank everyone (both belatedly and in advance) for being understanding about my late or unreturned emails, phone calls, missed deadlines, canceled plans, etc. And I want to give a huge shout-out to my assistant Bethany who has kept all of my projects (and her own) moving forward, at the expense of her work-life balance and emotional well-being! And thanks to everyone who has pitched in to help in any way they could, to friends and family and even acquaintances who have sent gifts, spent time, for good wishes, prayers, and positive thoughts.

We're hanging in there. It's been a rocky road and certainly not how we expected to spend our first year of marriage, but we'll get through this together (in sickness and in health, right?). Right now, I'm looking forward to August when Greg's last round of chemo (we hope) will be behind us. And may I add, thank goodness we have health insurance?

People have asked how they can help: please make a donation towards sarcoma research at the National Cancer Institute, or make a gift to Mt. Sinai where Greg is being treated.

22 comments:

Evan Roskos said...
This comment has been removed by the author.
Katy D said...

Sending prayers your way!

Evan Roskos said...

So glad to read that there's good news after so much uncertainty. I hope the coming months bring relief for you and your husband.

Jules at 7-Imp said...

Wishing you all the very best and sending good wishes from Tennessee.

Jules, 7-Imp

Barbara O'Connor said...

My heart and thoughts and prayers to you both. Such a rough road. I know you will have a smoother one in the future. God bless.

Karen Romano Young said...

Sending you love, Alvina. Thank you for the update.

emma d dryden said...

Thinking of you and Greg, and sending continued best wishes, as ever.

Justina Chen said...

Thinking of you and Greg and praying for health and peace. I think you deserve a second honeymoon. xo

Patti Hall said...

Wow, and to think this started "shortly after our wedding." What a roller coaster ride. Saw you on twitter and had to read your story.
Has someone told you about carepages or caringbridge? Basically patient blogs that keep friends & family updated. They love being kept in the loop, and it makes it easier on you to post in one place.
Best wishes to both of you!
Patti

Meghan McCarthy said...

Wow, Alvina, I hope this round of chemo goes well for Greg! How stressful.

Gregory K. said...

As a fellow Greg, I am not surprised by his strength... but I wish you both more of that, more patience, and more calm moments, too. All best vibes from California....

mima said...

Thanks for sharing, Alvina, and I am sending you and Greg wishes and prayers for health and peace.

Holly Thompson said...

Sending you and Greg wishes for positive news and good days. Hugs from all of us in SCBWI Japan.

Susanna Reich said...

You are an inspiration, Alvina! So glad to hear all went well with the surgery and that the end of chemo is in sight. Gary and I are thinking of you both.

Lee Wind, M.Ed. said...

Oh, Alvina! Holding good thoughts for you both!
best,
Lee

Sangeeta said...

Sending you good wishes and lots of hugs. On top of being our inspiration, you're a wonderful writer, Alvina! Thanks for posting.

Tracy Marchini said...

Sending positive thoughts your way, Alvina!

Anonymous said...

Sending good thoughts your way from Texas.

Naomi Canale said...

Sending you much love and prayers. Hugs to you both.

Anonymous said...

I'm so sorry for your rough times. Glad things are looking up.

Sue D'

Kyle T. Webster said...

Very sorry to hear about this, Alvina. I wish you both strength, good luck, and all other positive things in this challenging time.

- Kyle

Mary Pearson said...

I am a little late to hear this news, but still sending lots of good thoughts. I've been down this road twice with my daughters (chemo sucks but thank God we have it) Hugs, Alvina.