The new chemo, Lonsurf, is really kicking my butt the past few weeks. The fatigue is much more than I expected and no matter how much sleep I get, I am still extremely tired and having a very difficult time concentrating on even the simplest of tasks. I just finished the first round, which means that I get a two week break from the chemo, but I don’t know how long it will be before the fatigue starts to get better, if at all, and that just sucks.
I have been off work the past two days and have slept a crazy amount of time, at least for me. As an example, Sunday night I slept for about 7.5 hours, then slept again for another 5.5 hours Monday morning into the afternoon. Then I went to bed on Monday night around 8:00 and slept for 10.5 hours straight, yet still awoke very tired. In the past (even on chemo), if I got about 5-6 hours of sleep per night I was functional; 7-8 hours of sleep and I was a rock star.
But the past few weeks, it has become increasingly difficult for me to do anything that requires concentration, including reading or composing emails, watching TV, playing games on my PS4, and sometimes even just talking to people. My mind is all over the place and yet nowhere, all at the same time. Easy words escape me while I am talking and typing, and it frustrates me so much. I just feel so different from who I know I am, or at least used to be.
I’m starting to wonder if the whole quality over quantity thing isn’t making more sense again, because I’m just about useless like this.
With my health slowly declining, Tina and I decided that it was time for one last big vacation, so we started looking. We originally planned to go to back to the Hard Rock Hotel in Cancun, because we absolutely loved everything about it. The beach and ocean was incredible, the food and drinks were amazing, and the room and the customer service was more than we had expected.
However, Tina started looking around at other resorts in Cancun and when I asked her why, she said she was looking for something new and different. Then she asked me where I wanted to go; I explained that, in the end, this trip was going to be her memory, so I wanted her to make the choice. For me, I am just glad that we are able to go someplace beautiful again, and to be alone with each other, before my health is to the point where we can’t do so anymore.
In the end, Tina chose Hawaii, as we have always talked about going but never did. So, we started looking at the different islands, hotels, packages, flights, etc. and finally decided on the Hilton Hawaiian Village on Waikiki Beach in Oahu, Hawaii. We are in the Rainbow Tower, right on the beach, and facing Diamond Head, which is only about two miles away. We leave at the end of February and will be there nine glorious days!
Besides getting away with each other, and enjoying the beach and ocean as we always do, we are also very excited about the humpback whale migration, which is occurring now. We have already booked a whale watch excursion that guarantees that we see a whale, or we get to do the cruise again for free! We are also planning on visiting the Waikiki Aquarium, and are looking at taking a day to go to Pearl Harbor, and possibly Diamond Head, as well.
We are so ready to go! Twenty two days and counting…
Last week I started Lonsurf, the last in line of chemo that has any kind of chance of helping to slow down the cancer, even for just a little bit. Besides some frustrating but minimal GI problems, the only real other side effect that I have had to deal with is fatigue. Major fatigue, really. It doesn’t matter if I sleep for 8-10 hours, I feel like I got hit by a truck all the time. I’m having a hard time concentrating on much of anything and am seemingly much more forgetful than normal.
My coughing has improved a little, though my breathing has not. If anything, my breathing has become worse. My chest is feeling tight more often than even a few weeks ago, and catching my breath after I start coughing is getting harder and harder. Because I wanted to try to get ahead of my declining breathing as much as possible, I asked my doctor about getting oxygen at home, thinking that it would possibly help me when I am having difficulty.
This week I went to have an evaluation and did not drop below the needed threshold, which made me think maybe things aren’t as bad as I thought. They sent me home with a pulse oximeter and I had to wear it while I slept. I thought about not using my CPAP to see if I could skew the results to ensure that I was able to get oxygen approved, but in the end decided that I would use my CPAP and see what the results were.
On Wednesday I received a call with the results, which were more alarming that I had expected. Even with the CPAP, my Sp02 (saturated oxygen level in my blood) dropped below 89% for more than the hour required to be eligible for oxygen at home. Actually, my Sp02 dropped below 89% for a sustained hour, as well as additional times throughout the night, totaling quite a bit more than an hour. Also, my low point was 55%. That was something that I didn’t expect to hear, at all.
So, I will be getting an order for oxygen this week, and getting the tanks delivered to my house. Hopefully this will help with the fatigue as well, since low Sp02 levels are known to make people feel very tired. Thankfully, I will also be done with the chemo Monday morning and then get a two week break, which I am hoping will also help me to feel better.