Well, another 4 months have passed since my last update. On October 27, Greg married Taylor in a beautiful outdoor ceremony outlooking the Ozark Mountains.
We had a great Thanksgiving with everyone at our house including 7 grandkids running around playing. Miranda and Gavin are having another sweet baby in June. It's a girl! Avery will get a little sister and have another girl to face those 6 brothers/cousins with.
In December I had another stent exchange on the 2nd. It was only partly successful. I usually have 2 stents removed, and 2 stents replaced. The doctor was only able to place one in the right bile duct. The left side was too closed off with tumor. So I left for home with instructions to check back in soon with bloodwork and they would attempt the procedure again with a more specialized instrument that wasn't available at the location I had it done the first time. In less than 4 days I became very sick and jaundiced from my liver not being able to function. On the 7th I was admitted to Barnes in St. Louis and had a scan to see if they though the procedure would work, and then was able to have the procedure on the 9th. They were able to place 2 stents, but it took me awhile to recover from my bilirubin being so high. I was dismissed from the hospital on the 11th.
On the 16th, Kevin headed back to St. Louis with me for my usual 3 month scans and next day appointment with my oncologist. I was expecting my scans to show some not great things based on the scan I had in the hospital. At my oncology appointment, my doctor came in and I knew it wasn't great news. He said "disease progression" and "no treatment options available". I had been done with chemo for awhile, so the second part wasn't as hard to take. We talked about future expectations and what that might look like. Hospice was discussed, and what I could and couldn't do if I chose that path. I could travel, but I couldn't have stents replaced. I decided to keep going with the stents until they couldn't help anymore, and then go ahead and make a plan with hospice. My doctor told me that most people with my diagnosis don't survive 11 months past diagnosis. I knew this, and I am so grateful the the extra year I have been given so far. I won't be going back to see him or my Springfield oncologist. I will now just be followed by the Palliative Care team that I have been seeing since my diagnosis.
My cancer has spread within my abdomen and the large tumor in my liver hasn't really grown much in size, but appears to be invading the inside of my liver more. This is causing my bilirubin to stay above normal and giving me a little more pain. So I am trying to be grateful for each day I have and make it a point to do things I want to get done.
We had a great Christmas, I was feeling better and had taken care of presents and all the wrapping with Kevin's help way ahead of schedule this year. It was like I knew I wouldn't feel like handling it all close to Christmas. We had everyone at our house again and it was truly just a good day with everyone together.
I decided to make some travel plans. Kevin and I planned to go out to Las Vegas to stay with our friends Brad and Melody and they made us an itinerary to go to Zion National Park and the Grand Canyon. Unfortunately Kevin was sick the few days before we were supposed to leave so we canceled those plans. I am leaving on the 23rd to go to Poipu, Kauai with my best friend Kim for 10 nights. Kevin and I went there 21 years ago and I have been saying ever since that I wanted to go back. Kevin isn't a fan of long flights, water or the beach, so I decided to bring Kim along for some much needed girl time. Kevin also doesn't have time off teaching to go. We just made a new plan for Kevin and I to go on a quick trip to Houston and on to Galveston Island for Valentine's weekend. So we will have some time to getaway just the two of us.
On January 14th Grant took me back to St Louis to have my stents replaced again. I thought it would be good to have a fresh set before my trip to Hawaii and Galveston. It ended up being much harder to bounce back from than previous times. My left duct is now completely closed off with tumor when the stent is not in place, and then, it is still very occluded and not open much. My doctor said that they were there for me when needed, but not to just have it done without having significant side effect of having my bilirubin very high, mostly if itching and fevers became big complaints. It took me several days to get over nausea, pain and tiredness. I am finally feeling good enough to be up and about for the whole day without laying down. So progress is being made. I don't know if I will have another exchange or not.
Yesterday we had family pictures taken. We had one from the wedding, but Miranda wasn't able to be there because she gets so sick the first few months of her pregnancies. It had been 2.5 years since our last ones and we have 2 new grandkids and Greg is now married. I can't wait to see how they turn out.
I met with my palliative care doctor on the 17th. We discussed hospice options and I am going to go ahead with one company that has a person on staff that comes and talks everything over with you before actually going on hospice. The thing is with my specific cancer and the fact that it affects my liver so much is that things can change fast and I need to have things in place so I don't end up in the hospital.
Please pray that I will feel good for as long as possible and that my time of sickness will go fast and not be as bad as it could. I appreciate all your care, concern and prayers. I value and I am grateful for your presence in my life.
I love you,
Sheryl
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