On December 31, 2008, my sister and I joined Bert (my stepdad) and Mom in a doctor's office at UMC. A week or so before we had been informed of the cancer that unbenknownst to us had been growing rapidly in her uterus. Upon hearing the type (leiomyosarcoma), we were immediately warned not to "google" it. What does the normal person then do? Stupidly, I googled it at work and promptly had to excuse myself to the bathroom to be sick, cry, etc. You get the idea. Anyway, I think back to that day around lunch when the doctor came into the room for our first visit in regards to her prognosis. Mom probed him for details. We wanted the truth and didn't want anything candy-coated. Well, he delivered. He informed us that the average person in her situation (the uterine mass had already metastasized to 5 spots in her lungs) lives for 6 months to one year. He offered the options, one being to begin Hospice care immediately and forgo chemo. It was terminal, Stage IV. Mom looked "normal." We opted out of the Hospice and we agreed to fight the cancer (Mom hates when we use violence to describe taking it out, but that's the only way to describe it!) Being in the medical field, Lindsay, Mom and I all agreed that she would not endure chemo if it became not worth it. We didn't agree on a stopping point or any parameters to discontinue chemo, but she would NOT suffer just to get a few extra days.
At the time, my family thought we were living in a nightmare. I could not work a full 12 hour shift for months without breaking down at some point. Most nights at the dinner table, I would literally cry in my plate while Wade watched helplessly. Wade and I had started trying to get pregnant 3 days before she had the CT scan that initially identified the cancer. Would she ever meet the grandchild that she had BEGGED for forever? We had so many concerns.
On December 30, 2009, Mom sat with some of our biggest supporters. We threw her first annual "Heaven Can Wait" celebratory dinner. Mom is down to only 3 spots on her lung and continues to receive chemo about every other week. They have actually considered resecting the spots on her lungs. While this won't be a cure (nothing will as it will eventually come back no matter what), it will buy more time. Mom has met her first grandchild and completely basked in his presence (she has been in Jackson every week since he was born except one--he's 8 weeks old and she lives almost 3 hours away! You do the math.) This year we assumed would be our worst as a family. However, it has turned out to be the most rewarding year of my life. When you are given a "life sentence" you learn to appreciate all those little things that are typically taken for granted. We've made so many wonderful memories. Everett is going to be the warmest child ever as Mom has gone nuts with the quilting and, as it stands now, he has around 7 quilts to "remember her by." I realize that it could get worse at any point. I still somewhat live in fear that every cough or sneeze that she has is the beginning of a pneumonia.
This year I am so thankful to have my Mom in her (new) healthy state. We are attempting to attain a new normal while still appreciating everything. My wish for my 1 or 2 friends that actually read this is to hug your family just a tad tighter each day, tell your loved ones that you do love and appreciate them, and don't take for granted good health.
Mom meeting our boy, November 7, 2009
Everett's safe in Granna's arms
I have a 25 year old daughter who was diagnosed with LMS three years ago. She has it in 2 places...inoperable. She has a 5 yr old, and miraculously has a 1 year old----and is still in remission. The internet is a great place for info, support, and finding the best docs and hospitals out there for help. I will keep her and you in my thoughts. It is not an easy path to travel, but much beauty does come out of it.
ReplyDeleteto health in 2010
Hi, my wife (age 51) was diagnosed with LMS just over 5 years ago. She was told by a local Oncologist that there was no hope and no treatment for her condition (in addition to a pelvic tumor she had seven metastases to her lungs). We sought a second opinion from a sarcoma specialist at MD Anderson who recommended chemo and resection of the lung tumors. My wife followed that advice and had surgeries to remove the lung metastases. She's had a recurrance in one of her lungs and has had a couple of recurrences in her abdomen. She's had several surgeries, but has enjoyed extended periods of being healthy during which she's enjoyed a high quality of life. As a matter of fact, she had an abdominal surgery this past October and we just spent the past three days in the Colorado mountains snowshoeing, cross country skiing, and alpine skiing!
ReplyDeletePlease make sure your Mom sees a sarcoma specialist (someone who sees at least 100 sarcoma patients a year) - these doctors are generally located at the major cancer centers such as Dana Farber, Memorial Sloan Kettering, MD Anderson, etc. Also there are online support groups such as the one on ACOR.org (enter leiomyosarcoma in the search box for the mailing list). I credit the infomation learned from this email group as the reason my wife is doing as well as she is.
Best of luck you your Mom and your family!
What a heartfelt post! I hope your mom continues to recover! Prayers are with you all!
ReplyDeleteHi - I'm an 8 yr. uterine LMS survivor!
ReplyDeleteI owe it all to the online LMS group for teaching me everything from chemo, surgeries the right doctors, etc. Join here:
ACOR L-M-Sarcoma
http://listserv.acor.org/archives/l-m-sarcoma.html
I also raise money for LMS research... and we have great new info for all of us which I will post on the LMSarcoma Direct Research Foundation home page soon... stay tuned!
www.LMSdr.org
Sending hugs,
Sharon in San Francisco
Thank you for reminding me exactly what we should be thankful for and here's to a great New Year. May it be filled with amazing things!!! Enjoy every minute, no second you have left off with your family. See ya at work all to soon!!!
ReplyDeleteok, so I was taking a break from studying, since i've been doing it all day....now I'm sitting here in tears trying to call my mom to tell her how much I love her! Your mom ROCKS! I'm so glad that she had a 1 year party! I pray that there are many more Heaven Can Wait annual parties to come!!!!! Thanhks for reminding me what is truely important!! Family.
ReplyDeleteHeck yeah! Go mom!
ReplyDeleteWhen my Dad was diagnosed, they gave him one year, and that dude stuck around for 3 1/2, and made every second count.
What a blessing that you have each other.
Sending you love, strength and healing.
xo
erica