Before we left on vacation I made myself a calendar of activities to do once we got home. I found support groups and classes to take. Things to keep myself busy. I was really looking forward to getting into a routine.
Getting sick and going back into the hospital threw everything off. Having the biliary bag put in killed all of my swimming plans. Having infections squashed all of my gardening plans. And not knowing when I have to take pain medication makes it difficult to plan things that involve driving myself. So besides feeling somewhat sick everyday, I’m having a hard time getting into a routine and getting out of the house.
I’ve even been struggling to find things to keep me occupied in the house. I’m tired of TV. I haven’t been interested in doing computer things I normally like. I haven’t even kept up with this blog. I haven’t reached out to people as much as before and I know that’s been effecting me too.
I did buy a knitting kit to try and teach myself to knit. Haven’t really gotten very far with that yet. I have puzzles and games that keep me interested in short spurts.
I just know that I’m down. I think I’ve finally had the time to be alone and take in everything that’s happened in the last 5 months. It’s a lot. And I’m not sad in the “why me” kinda of way, just trying to figure out what routine I need to keep my mind off of being sick.
I struggle with the frustration of planning anything. I’m realizing I need to just plan like I normally would and not worry about if I have to cancel things. It’s going to happen and I need to accept that.
The good news is I’m back on a normal chemo schedule. The side effects are getting a little worse but are still quite manageable. The worst of all of my symptoms is I have mouth sores. I have rinses that help but then it numbs my mouth and changes my taste for everything. And that makes it tough when I’m struggling with my appetite. Hopefully it won’t get much worse than what it is now. The only other major struggle I have is with fatigue which also contributes to my being down right now.
I know things will be more manageable once I do get into a routine. I’m going to start going to a couple of support groups at the hospital and an art therapy class. I found a couple of yoga classes specifically for cancer survivors that I want to check out and hopefully they’ll get my gallbladder worked out so I can swim again sometime this summer. I will be reaching out for contact and support again too.
We all have ups and downs and I’m surprised it took this long to get to this. I’ve just had such great support I haven’t had a chance to be down I guess 😀
I was discharged from the hospital on May 1st.
Melissa, a very dear old friend of mine from my Glassmen days, was in town for a work meeting and came early to spend some time with me. It was great to spend some time with her and also a nice distraction from not feeling well.
I felt OK the first few days she was here, but started to decline. By the weekend I started to get fevers again. I was so upset.
My discharge orders stated that I needed to contact them if I got a fever over 101.5. I got up to 101.8. I cried. I didn’t want to call in because I was sure they were going to bring me back in the hospital. I called and explained everything that was going on. Luckily, the doc didn’t feel like coming in was going to help anything so he had me continue to take Tylenol and follow up with my oncologist on Monday.
Because of the fevers he decided to postpone my chemo by a week. This was an upsetting situation to be in. Risks in dealing with the gallbladder. Risks in putting off chemo. Feeling like I was going to be very sick whatever happens.
By the end of the week I was still getting sick and having fevers so on May 10 it was back to the hospital for me. Hmph. I at least got a chance to pack myself for this stay. I also decided to cut my hair before going in. The long hair was too much to deal with anymore.
The other bonus was I was the lucky person to get “The Suite” on the oncology wing. They have 1 room in the whole wing that is almost twice the size as the others. They give it to whoever is coming in and the room is open, but I felt like I won the lottery. It was nice! I joked that it was my upgrade for my frequent flier miles.
I met with an infectious disease doctor who did a bunch more tests to find out what was continuing the fevers. They still suspected the gallbladder but they weren’t 100% sure. They switched medications and I passed the time as best I could. Since I’ve been dealing with some kind of infection, it was advised to not have visitors. Even though this was the shortest of my hospital stays, it seemed like the longest being sequestered.
They never did find what exactly was causing the fevers but they did find an antibiotic that worked in keeping the fevers away. After 4 days I got to go home again.
They sent me home with this antibiotic in an IV form. They taught me how to do it and every 6 hours I hook myself up to the IV.
Once I was back in the hospital (April 26) they ordered a million tests to find out what was causing my fevers. Blood tests, scans, pokes and prods.
One of the tests they ordered was a HIDA scan. They didn’t really tell me much about the scan before hand. That was probably a good thing. The machine kinda looks like a small CT scanner.
It’s similar to the machine in this picture but the one I was in seemed a bit smaller. I had to lay flat on my back with my arms to my side. No room to move at all. Unlike the above picture I was completely inside a tube. My head was the only part that was out. Luckily I was very tired and went to sleep. I think they may have given me sedatives at one point too. After a good snooze I woke up and stared at the ceiling for awhile. As I was waking up I realized how stiff I was feeling. I asked the technician how much longer it was going to be. He said just 15 more minutes. Ugh. Well, it turns out I was in that machine for 96 minutes. No wonder my butt hurt so much! So thankful I was that tired and had no idea that’s how long I was going to be in there. No way that would’ve gone as well as it did had I known. haha.
They finally figured out that my gallbladder was inflamed and likely causing the fevers. It was the gallbladder attack that lead us to those first scans that found the liver spots. The cancer trumped everything once we found it and now the gallbladder wants attention again. Unfortunately since I had that major surgery they didn’t feel like it’s safe to take the gallbladder out.
The best they could do was to insert a tube into my gallbladder that attaches to a bag where the bile drains into. Another thing to hang off my belly. Ugh. I was not excited about this bag at all. Even though it temporary, I will have it for a minimum of 4 weeks. After that they will re-evaluate if they can go ahead with surgery. I suspect they will put surgery off for as long as possible.
I stayed in the hospital for almost a week and was so happy once I was home. Wasn’t expecting that detour from vacation.
The last two days of the cruise were at sea. Since I had enjoyed my off shore adventures so much I was feeling a bit run down and spent more time in the state room. I slept. And slept some more. Before I knew it I had slept most of the evening. I joined everyone for dinner but left early. I don’t even think I had desert that first night.
I woke up in a full sweat, burning up. I took my temp and it was 103. I had been informed all along that if my temp was above 102 that I needed to see a doctor.
I was by myself but luckily Kian stopped in the room. I had him find MJ.
The ship’s doctors are only available during certain hours of the day. This was 10pm so they had to page them in for me. Joy. I’m sure that’s going to be cheap.
By the time the Doc and Nurse came down and took my temp I was up to 104. And I was pretty miserable. And scared. It’s not really fun to be that sick in the middle of the ocean. I knew this was always a possibility, but you hope for the best and by the last two days I thought I might have made it through. My body decided no.
There wasn’t much they could do for me on the ship. They pumped me up with Tylenol and IV antibiotics. It got me through the next day and 1/2 to get me home.
They tried to keep me as comfortable as possible. The doc was from Sweden and the nurses were all from South Africa. Interesting group. The one nurse took to me though. Her husband had died from cancer and she was the one who would come and sit with me through my IV treatments. Seems like she never talked about it much. I’m glad I was an ear for her to bend.
Unfortunately we didn’t have a direct flight from Ft. Lauderdale. We had a layover in Chicago. It was going to be a long, brutal day. The only thing I could do was pray that the Tylenol would hold up to keep me together until we got to San Diego.
It did the trick well enough as I was able to manage. I slept through most of the second leg. Once we landed we drove straight to the Urgent Care Center. Do not pass go, do not collect any clean clothes.
Urgent care seemed as stumped as to what to do with me as the ship docs. They recommended we head over to the ER. Great.
Luckily, our experience with Sharp has been so great so far. We hardly had to wait once we got to the ER. Practically walked in.
The ER docs weren’t quite sure what was going on either and I knew what that meant… a stay. They suspected my gallbladder but they needed to find out for sure so I was admitted. Kinda weird going from the airport to hospital. I at least knew they would take good care of me.
Our final stop on the cruise was to dip our toe into South America in Cartagena, Colombia.
It was hot. Very hot.
We decided to take a cab to the old town and we were going to just walk around. The cabby offered to tour us around so we decided to do that instead. He drove us around to the important old sites that I’ll be honest I didn’t pay too much attention to what they all were. We drove and walked around all over old town and here are some of the pics:
The highlight of the day for me though was meeting Pepe.
We were at the top of a hill at a monastery when a man holding a three toed sloth came up and asked if we wanted to hold it for $3.
Um, YEAH!!!! Hell, yes! It’s a sloth!
So we all took turns holding sweet Pepe. He was super cuddly. Not exactly soft, but not wirey either. It was just cool.
We didn’t purchase any of the excursions the cruise line offered. Too expensive. We did look at all of them though to try and decide what was available to do at each stop in the time we would have available at port.
MJ was the one to look up and research most of this. I just kinda went along for the ride. I was happy to be out and about and was pretty much game for whatever.
When we got of in Panama and MJ talked about going to an Indian Reservation, what came to my mind wasn’t at all what we saw that day.
When we were in Australia we went to an “Aboriginal Culture Park” where we were toured through an aboriginal experience but all staged. I guess I assumed that was the kind of thing we were going to do on this day.
I was wrong.
My first clue was pulling up to the side of the river and they pulled the canoes up that would be taking us to the reservation. It was a rather rustic ride. But very peaceful.
It was an amazing welcome. They sang and danced as the greeted us and they seemed genuinely thrilled to welcome us and show us around. Come to find out that this is primarily how they make their money. Show the rich white people around. For having to make a living that way they were genuinely kind and sincere in sharing their way of life. Very happy people.
The chief/medicine man gave us a tour of the grounds. He showed us the school he built for the children, the different huts and their functions as well as some of the living spaces.
He also showed us uses of some of the fruits off the trees. Mostly medicinal remedies such as snake bites and bronchial issues.
After our tour we were treated to lunch. They fried fresh talapia from the nearby lake wrapped in a banana leaf with fried plantains. It was the best fish I think I’ve ever had.
After lunch they treated us to music and dancing. It was beautiful! I was invited by one of the little boys to dance and I had the time of my life.
I was so grateful to be invited to share in their lives and it was such an amazing adventure.
On our way back to the ship we passed by one of the many tourist shops and MJ spotted a “Colón” baseball cap. We had to get it. I mean, I needed a “Team Colon” hat for my chemo days 😀