Life's Journey

Again I feel I have a lot to catch up on, things are changing and moving so fast but that's what I've learned cancer does - its constantly moving and changing. Let's start with part of the latest update… I had an appointment with Dr Gordon, the experimental guy, last week to talk about a clinical trial he's working on. He and Dr B thought it would be a good opportunity for me since they were seeing good results in the 2 patients they had used the drug on. This was the scary part about it - this is a stage one trial meaning it's never been used in humans before. But if it might work and it might help others someday I had nothing to lose at this point. As we talked Dr G explained that he was a little nervous because of something he saw in the PET scan and wanted me to have a diagnostic CT scan run (this just shows more detail of the disease). He was concerned about the disease that is pushing against my bowels. Apparently a side effect of this drug is potential bowel perforation and he felt that with the cancer in this location it may be adhered to the colon leading for larger potential of this issue. I had the diagnostic CT run the next day and he requested the results stat. So we wait….

The next morning we left for Alaska and just got home yesterday. Yesterday was quite the day of travel but more on that later. When we arrived in Fairbanks it was lightly snowing and dark so we couldn't really see much of the scenery. But what we could see on our drive to the log cabin was a winter wonderland. Forests dusted with snow and fresh untouched snow all over the ground… it was beautiful. The log cabin is very remote - 20 minutes outside of the town on snowy windy roads. The cabin was perfect. It was a true had built log cabin with all the necessary amenities. There was a bedroom downstairs with a large open living room and kitchen space. The ceilings were vaulted and there was a bedroom in an open loft upstairs. We were all very comfortable. They had walkie talkies in the cabin for us so if the Northern Lights were visible they would announce it over the walkie talkies. Unfortunately we were not able to see the lights either night we were there. Turns out we picked two snowy nights.

Dr G called me Friday night with test results. He wanted me to see a GI specialist prior to starting any kind of treatment he felt concerned about this obstruction in my bowel. They scheduled an appointment for me to see Dr Kim (who I saw back in September of last year when we talked about doing that big surgery) next Thursday. Ugh.

But, for now we were in Alaska, the wild frontier. We decided to go for a dog sled ride while we were there. This was an awesome experience. We drove about an hour through more snowy windy forest roads to get to a small cabin and dog kennel where they do the rides. We were greeted by a few of the dogs as soon as we arrived and then met Anita, Josh, and Garrett who run the facility. They are an amazing group of people and made us instantly feel welcome in their home. The dogs were quite a sight. They have 22 dogs on site and they raise them like family not like work dogs. They do this because they love it not because they have to. I would highly recommend doing this if you ever get the opportunity. They taught us a lot about how the dogs are raised, how the sleds work, how to harness the dogs, and MUSH! I was sitting on the sled with my feet straight out in front of me, the freezing air (it was -11), the snow hitting my face, and the rush of the dogs pulling us through the trail. The trail was a beautiful windy narrow path through the snow covered forest. It was a great experience that I will never forget. So I'd have to say that this made up for not seeing the Northern Lights. When we got back to the cabin I said "this wasn't on my bucket list but I'm going to go home and add it and cross it off!".

I honestly wasn't sure I was going to make it on the sled. I wasn't feeling very good that morning (Saturday). My stomach was a mess and I felt like there were aliens running around in my guts. I knew I was getting constipated but this was different. I felt nauseous and backed up all at once. I didn't want to eat or drink anything and I thought I for sure didn't want to drive an hour on windy bumpy roads. But, I'm glad that in the end I soldiered up and did it! They only took two people out at a time so Roy and I went first and our friends went second. Each ride was about an hour and I'd say we spent most of the day at the dog sled cabin. As we were leaving I was feeling more and more sick and finally had to ask to pull the car over. I jumped out and before I knew it I was vomiting in the snow. After that I made it home and went to bed. I slept for a few hours only to wake up sick again and again and again. The pain in my lower abdomen was awful and the aliens were having a party in my guts. Things were not good. But here I was in the middle of nowhere Alaska with my husband and friends for MY bucket list trip. I just couldn't muster through it and slept through the rest of that night. I must've slept pretty hard because Roy ended up packing both of our things that night because we had to leave super early the next day (Sunday) for our day of travel. This was yesterday… we were up at 5:30 and had to leave the cabin by 6:30am. Roy and I were on an 11am flight but our friends were on an 8am flight so we were at the airport 3 hours early. The Fairbanks Airport is tiny! There was one open coffee bar and some tables for us to sit at, one little tourist shop and that was it and we had three hours to kill. I still was not feeling very good but I was up and about for travel. Our first flight took us an hour from Fairbanks to Anchorage. We had a quick connection in Anchorage and were headed to Seattle. Our plan had to be de-iced so we left a little later than scheduled but we were off. It didn't take long in the air before my nausea overtook me again and I found myself vomiting in the "seat occupied" bag in the seat pocket in front of me. I got up and went to the back of the plane. The flight attendants tried to help me but there wasn't much anyone could do. I was sitting on the floor at the back of the plane for most of the 3 hour flight with my head in a trash bag. I've never been so sick or felt so awful. I was shaking and cold, tired and just sick. I felt awful. I kept thinking can I get on the plane in Seattle or will I need to go to the ER in Seattle. The plane landed and we had minutes to get to our connecting flight. So I again soldiered up and got on the plane from Seattle to home. It was a little more than 2 hours. I took some meds that seemed to be staying down finally so I was able to rest. I made myself just shut down and sleep the whole flight. We made it home around 11:00pm last night. Phew! It was a looooonnnnngggggg day.

I had been texting super nurse Michele while I was feeling sick the past two days. I explained that I hadn't eaten, the vomiting, and the other symptoms I was having. She managed to get me scheduled with the GI Specialist, Dr. Kim, earlier. I saw him today. I am still in an extreme amount of pain. Sometimes I find myself pacing the house taking deep breaths just trying to center myself and maybe step away from the pain somehow. There is so much discomfort. It's like there is a bowling ball in my gut. I don't want to and really pretty much can't eat - there's no where for food to go at this point. Things are not good. In my meeting with Dr Kim I found out this obstruction is causing a lot of problems. There is a large amount of stool backed up which is causing a majority of my symptoms. We have to go to surgery to do what they are calling Palliative Colostomy. This means they are going to cut out the diseased section of bowels and I will have a colostomy bag. If you don't know what this is please google it - I really don't want to explain that here but it's basically a poop bag. I'm terrified. This is something I've said I would never do - I didn’t want to end up with BAGS… and here I am stuck in the situation where if I don't have the surgery I will most likely die to a painful bowel obstruction or perforation. I'm in so much pain I don't know how to live with it… So bag it is. There is no other way I would have this surgery if I didn't have to to survive. The surgery is scheduled for this Thursday the 19th at Good Samaritan Hospital in Phoenix. Recovery can be 5-7 days so it looks like I'll be spending this Christmas in the hospital. Sigh. I'm sad, scared, and extremely depressed about all of this but I don't get a choice in it. It is was it is.

So, I may not have an update for a while but will ask that Roy post to let everyone know how surgery goes. I'm sending everyone warm holiday wishes and lots of hugs and smiles. I love you all.

Xoxo - Sarah