Merry Christmas from room 4309

(Scott)
Christmas is now officially "over" and tonight I'm blogging from beside mom's bed as she sleeps, or adjust to sleeping in a warm hospital room... OOOPS... I typed too soon, I'll explain.

As I've mentioned previously mom went to the hospital earlier this month, on December 11th for bowel pain that turned out to be an obstruction caused by diffused gastric cancer. That eventually lead to mom getting an ileostomy. I believe I previously said she had a colostomy. That was wrong. An ileostomy is when the SMALL intestine is re-routed to exit through the abdomen, by passing the large intestine or colon. We've learned all about this.

A lot of times it takes a while to figure out just how to keep the bag or "appliance" on the skin. We've had a lot of struggles with that... we've had lots of leaks, one nurse thought she had it on and then when mom got up to empty the bag with Amy here last night the damn thing fell off, the glue doesn't stick, the glue sticks too well... and on and on.

As I started this post, mom rolled over to her left side and the contents of the bag literally poured across her as the "wafer" of the appliance wasn't attached to her skin on the left side. We couldn't see that side because the dressing for her sutures (from the surgery) was covering the base of the appliance (which it shouldn't have). So... Mom is now resting with a new, still empty bag.

And that's where we are.

On the 23rd Mom moved to the Transitional Care Floor of the hospital. This wing is basically for patients who are healed enough to no longer need acute doctoral supervision and care, can get by with no IV's, without a lot of pain meds, but still need to get stronger before going home. So there's a large physical therapy room here, unlimited guest hours and mom can pretty much eat whatever she wants, wear her own clothes and have some needed support while she gets stronger.

We had high hopes that she would go home on Christmas Eve, but they said no. Tomorrow she'll have another physical therapy appointment to assess her strength and we'll see what they say. She's been eating a lot more, drinking water, and has had a much better attitude. The experiences with the bag and meeting with the ostomy specialist really seemed to calm her nerves about staying for a few more days. It sucked to have her in hospital for Christmas Eve and Christmas, but in the end it seems like it was for the best. We know a lot more about this ostomy bag, and mom's getting more time to get used to it in this controlled environment before heading home.

If she doesn't go home tomorrow or Sunday morning, unfortunately I won't get to see her leave the hospital before I have to be back in Michigan. Amy has made the commitment to stay until mom is home, settled and doing well. I'm sure having Brad come to Butler this weekend for Christmas helps her. I am missing Ian and Zander and have obligations that I cannot miss this week.

But even if she's not out by the time I have to leave I know that mom is on the mend. The climb out of this valley is on the way and she's getting stronger every day. We just have to hope for the best and cherish this upcoming time, riding the wave of good news for as long as it can last.

An early visit for the holidays

(Scott)

At the end of the last entry, I left saying that we will see what tomorrow brings us. And it brought me back to Butler a week before I planned on coming to town, and put us in the hospital with mom having emergency surgery.

Cancer sucks.

It was late Thursday night when I rolled into downtown Pittsburgh to pick up Amy from The Beer Hive where she had been hanging out for about an hour between getting off the train from Philly and meeting me to drive to Butler. Amy’s trip to Butler had been planned for a while. Dad and mom were going to pick her up and go to dinner at The Spaghetti Warehouse, then she’d spend a week of quality mom/daughter time before I came down from Detroit and Brad came in from Philly. 

Unfortunately, after hoping that mom’s blockage would resolve, something it clearly had done before, the doctors decided that after she stopped being able to keep any food down or pass any stool, they had to get in there and see what was happening. The unplanned operation brought us together the Thursday night before Christmas.

A call to Dad on our way to the hospital lead to a tearful drive.

The surgery was exploratory. At Butler Memorial Hospital, there’s only so much that the doctors can see on a CT scan and X-Ray. I have to wonder if mom was at a better hospital with more imaging equipment, they might see more.

So they had to open her up to see the problem up close.

The result… mom’s diffused gastric cancer, the product of lobular Breast Cancer’s spread is much worse than it was only weeks ago. The strands and webs of cancer have fused parts of her small bowel together and stuck them like glue to places in her gut that they should not be. Their only option for resolving mom’s blockage was a colon ostomy.  In explaining this to dad the doctor who performed the surgery used words like “Terminal” and “Palliative Care.” The weight of mom’s condition hit home, like a boulder through a stained glass window.

The good news for now is that this is not the end. But there are no junctions between here and the last station of this train ride. What remains to be seen from here on out will be the twists, turns and speed of the journey. And like every other stop along the way, our focus has to be to just get through this moment. Tackle the small goal for now and let the battles ahead come when they get here.

For now, the task is healing from surgery and getting mom well enough to leave the hospital. Once she can do that, then we can have the discussion about treatments. Chemo, hormone drugs, or something else, or a combination of things.

Amy, Dad and I shed a lot of tears over the past 24 hours. And Ian, Brad and our family and close friends have offered support and love.  Amy’s work and my work have been incredibly supportive. Modern technology makes it possible for us to work from the hospital, even from mom’s side while she sleeps or while the elderly gentleman across the hallway unintentionally (maybe not?) shows his genitals to everyone in a 20’ radius of his doorway. Hospital fun time.

Tomorrow we hope that mom will be strong enough for visitors. I’ll post an update on my Facebook Page (scottallenmyers) when she’s in visiting shape. Until then, keep those prayers and good thoughts coming. Every single one of them is felt and truly appreciated.

Do we worry, or just see what tomorrow brings?

(Scott)
With the holidays upon us it feels fitting to update my mom's cancer blog.

As I had mentioned in September, things have been going along really well. After mom's last PET scan showed no changes in the diffused cancer in her abdomen and a reduction in the small spots on her hip we had cause for optimism. After replacing their nearly 30 year old bathtub with a walk-in shower, it seemed like mom was happy to have activity back in the house. Over the next month or so she and dad worked to replace their bathroom sink and put up new panels that give the bathroom a completely new look.

Mom even felt so good that she dug-in and started really cleaning the house for Thanksgiving, she made the Turkey for dinner at her parents. After Thanksgiving dinner it was clear that mom over did it. My visit to their house was dimmed by the fact that mom was really sick nearly the whole time. It seemed like a stomach virus, but with her history we always worry about stomach pain and sickness and cancer.  She felt better on the day I left to come back to Michigan, and on her following doctor appointment, she had a relatively good report.

So after Thanksgiving we were still optimistic, but very cautious.

Today we heard from Dad that mom spent this past weekend in the hospital after getting really sick again on Friday with stomach issues. Since it's the weekend, we're waiting for her to see her oncologist and the doctor who did her bowel surgery earlier this year. Mom is optimistic that she's not going to be there for long, but she is fighting a minor infection and may have a bowel obstruction. The good news for now is that if there is a bowel obstruction, we're aware of it early and she is able to eat and pass food. 

I could get really worried and I could be really upset, but it feels like this is the road we travel with a bitch called Cancer. She comes and goes and we can let her make us scared and worried or we can hope and pray and take each day as it comes. So good vibes, thoughts and prayers are welcome - a kind word or a good thought are great. And we will see what tomorrow shows us.