Not The Best Valentines Post

This is Andy, posting for Sue

After a long night and rough morning, Sue decided to change from palliative to hospice care, and we’re started the process for an inpatient admission.

Obviously we have a lot on our minds and hearts today, and are asking for a little time and space for ourselves. We will do our best to include everyone who wants or needs time with Sue, just not today.

As a valentines post, this is about as awful as they come. So, here is a memory of one of the 3 million times I took Sue’s picture without her looking, only to have her catch me immediately after. She would then usually say something about not posting it, right after I hit post. Hug and hold whoever is important to you today, I plan to.

 

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Home Sweet Home!

home

After 16 days in the hospital, I am thrilled to say that I am back home and getting settled! It felt great to put on real clothes after sitting in a hospital gown for so long. Of course, Bell Ambulance took excellent care of me again, complete with gifts of a warm, soft blanket, a cozy hat and scarf. I have to admit, I was a little nervous about leaving the hospital, where nurses came at the push of a button. I’m very weak and concerned about how I’ll do at home. But it definitely feels good to be home!

I’ll be setting up a spreadsheet tonight for times when Andy is at work and the girls are at school. I’ll need someone to check on me during those times. Bring a book or something to do. 

 

G-Tube

I had the procedure to place the G-tube on Tuesday. I was extremely nervous going in because the surgeon warned me that it would be very difficult to get the tube in place given the number and density of the tumors in my abdomen. There was a possibility that he would not be able to place the tube. The procedure was late in the day, so it was a hard day contemplating what would happen. 

Finally, it was time to go under and I put all my faith in the skilled hands of my surgeon. Happily, I woke up to (mostly) good news. He was able to find a window to get the g-tube in place, and I woke up with the tube out of my throat. It was only a partial victory, though. The stent was already being crushed and the g-tube would only be able to be used for venting. Originally, it was hoped that it would also be able to be used as a feeding tube. My tumors are too extensive, though and nothing can get past my stomach. I will continue on IV nutrients. 

The goal is to have the g-tube drain my stomach via gravity, so I don’t have to be tethered to the wall suction unit. The surgeon wanted me to stay on wall suction for the first night, just so we weren’t risking symptoms overnight. The next morning would be the test to see if gravity would drain the fluids. We switched the machine off around noon and waited. The gravity drain was working! The good news is, that puts me one step closer to getting home. 

Before the weekend, they started the ball rolling to get me home. I’ll need a hospital bed, an IV, a walker and Home Health Care in place at home before I can go. Of course, nothing happens over the weekend, so I’m back to resting, reading, visiting with friends to pass the time. Monday things will get moving again. Hopefully, I will be home this week. I will need people to check in on my when Andy is at work and the girls are at school. They don’t want me to be alone in case I need anything. I will be calling for help soon. 

Partial Success

Partial Success

When I woke up from the procedure Monday night, I was told that the stent was successfully placed and I felt a great sense of relief. Soon, it became apparent that it didn’t work as it was supposed to, though, and I started getting all the terrible symptoms that brought me to the hospital initially. The fluids were continuing to build up in my stomach and soon I had reflux, nausea and vomiting. Monday night was an extremely rough night without the NG tube in place to provide relief. I saw the surgeon at 6:30am Tuesday, and he ordered the NG tube to be placed again. It seemed to take forever, but by 11:00, the tube was back in place and I started to get relief from the symptoms again. 

Clearly, we are on to step two in finding a solution to this current obstacle. The plan is being discussed and I have decisions to make along with the guidance of my surgeons. The GI surgeon would like to place a second stent. He used the longest one the first time, and was happy with the result, but did say there is another area at the edge of the stent with a partial restriction. He hopes to open that spot up a bit. In addition to the stent, he will place a venting G-tube directly from my stomach. The G-tube takes place of the NG tube that is currently down my nose and tethering me to the suction pump next to the hospital bed. With the G-tube, I will have full mobility with the goal of returning home. 

While we finalize the plan, I am being kept comfortable and resting. Happily, occupational therapy is working with me now to get me out of the room for hallway walks. It feels good to get up and around a little bit. I should have a plan in place today. The procedure may be today or possibly tomorrow. I will try to keep updated. Keep the good energy coming my way!

Obstacles

Obstacles

disney fam

Disney World was amazing. It felt good to get away and feel the warm sun on my skin. We picked the perfect resort. Of course, the parks were incredible and we had a wonderful time together. We couldn’t have planned the trip any tighter, though. I was very sick most of December and January and the trip nearly was canceled too many times to count. I pushed through increasing sickness and managed to have a great time. I’m so happy we went and I’ll treasure the memories we made together in that Magical place. Luckily, the flight home was uneventful. 

Once home, I really started to get sick. My regular oncology appointment was the next day, so I went to bed and waited for my appointment. By Tuesday, I was throwing up continuously and my doctor decided I needed to be admitted to the hospital. I had a CT scan that day, which showed that the tumors in my abdomen had grown and spread and were now completely blocking my intestines immediately below my stomach. This is the reason I have been unable to eat or digest any food or water. It was a long day with a lot of new doubts and fears. 

Unfortunately, Andy had to leave to get some sleep for work the next day, so he missed it when the doctor came in to tell me the bad news. He told me about the obstruction and said that normally this is surgically repaired. In my condition, they need to avoid surgery, though, because I’m not healthy enough to heal. Because of all of this, I am also no long going to be able to do the HIPEC procedure that I was putting so much hope into. I called Andy right away. I was left with this news to dwell on all night.

NG tube

The first step to getting some relief from the nausea and vomiting was to have an NG (nasogastric) tube placed down my nose to my stomach so they could drain all the fluids and secretions that were making me sick. I’m not gonna lie-the placement of an NG tube is not for the weak of heart. It took two attempts and it was pretty awful. I knew it would bring me relief from the symptoms, though, and it has been a lifesaver. I no longer have nausea and vomiting and I generally feel pretty good. The tube is uncomfortable and gives me a sore throat, but it’s worth the trade off for feeling better. 

As Wednesday went on, more information started coming in on other options for me, and I started to feel more positive and confident that I still have the possibility to get beyond this big hurdle. I consulted with a number of Doctors and Surgeons and learned that there are less invasive options we can try. First, they can attempt a scope down my throat, through my stomach and attempt to place a stent to hold my intestine open at the point of the blockage. This is the most desirable option to get me back home. If that doesn’t work, they may be able to place a venting-gastric tube out of my stomach to take the place of the NG tube I currently have. With the NG tube, I am stuck in a hospital with a suction apparatus attached to the wall. With a venting G tube, I would be free to go home once everything is working and I’m feeling better. This is also a difficult procedure because the tumors are in the way. 

But first, I needed to get a bed at St Luke’s hospital where the procedure can take place. That turned out to be harder than expected. I spent a couple of extra days just waiting for transport. Meanwhile, I was feeling good, reading, watching movies and being very well cared for. I had some really meaningful visits from my amazing doctors (and Team Phoenix founders!) while I waited and each visit boosted my confidence that I could overcome this overwhelming obstacle.

It wasn’t until Friday morning that I got word that a bed had opened up for me at St Luke’s. Andy was working that day at Bell Ambulance and, ironically, his former co-worker was my NP at the hospital, so between the two of them, I got a deluxe ride with Bell. The crew was really nice and the ride was smooth. To top it off, right as they were transferring me to my bed, a woman walked in with the most beautiful bouquet of flowers! From Bell Ambulance. Nice touch!!

Bell flowers

PICC line

Being Friday afternoon, I thought I’d be in a holding pattern until next week. Was I wrong. I had so many doctors and surgeons stop in and some really good consultations. The plan was being set firmly into place so that on Monday we’d be ready to do the procedure. Since I cannot eat anything, I got a PICC (peripherally inserted central catheter) line placed so that I could start getting IV nutrients over the weekend to build some strength.

Now I have Sunday to rest, strengthen and watch the Super Bowl. Monday is going to be a really big day. I’ll take all the love and support the universe can send.