A random list of thoughts about cruising with cancer:
1. When food is not my friend, the last thing I want to do is pick out food from a buffet while being surrounded by plates overflowing with mixed cuisines.
2. Walking on the deck, I worry about my wig flying off and into the sea
3. Waking up every morning to the sound of the waves made by the ship, ocean breezes, and ocean everywhere
4. Smell of Caribbean missing the seaweed smell of the Pacific
5. No worries about mixing wine, rum, and chemo
6. Seeing my hubby smile, son laugh
7. Wondering how I can go up and down the 14 flights of stairs and a few days later wondering why I would ever use the elevator
8. Seeing cruisers smoke non stop, drink non stop, and wondering why they feel nothing of the consequences of their choices, while I have been poisoning my body with chemo just to stay alive. Short term anger followed by thankfulness to enjoy the cruise. Meanwhile more casualties of cancer loose their fight the same week while I’m enjoying the Caribbean
9. Even though I can’t taste most food, the beauty of each presentation is a visual feast for my eyes
10. While my hair is showering into the tub, I hope that it doesn’t clog the tub and that my eyebrows don’t completely fall out before the formal night
11. Drawing on eyebrows while the ship moved can be a difference between a happy and an angry facial expression
12. Happily walking on deck with my hubby after a rain shower while the rest of the passengers complain there is no sun.
13. Enjoying every moment! Blood count decisions, hibernation, chemo pre meds, and drug toxicity is replaced with: when is my next meal, what show do I want to see, and where to sit and read a book/listen to music
14. Where listening to music to drown out negativity and crying/moaning patients is replaced with listening to music to drown out drunk passengers and listening for pure enjoyment rather than a means to coping with chemo closet
15. Answering questions of what to drink and eat, where to sit, instead of talking about all my ailments daily: nausea, digestion, appetite, pain, diarrhea, bowel movements…there is much to be said from not answering these questions daily, seeing the faces of cancer, and taking a vacation from the cancer job…almost forgot that I had cancer!
16. All of us needing this break from the monotony of my efforts to stay alive and loved watching my boys enjoy the vacation as much as I did
17. Easy to stay positive when all that is in your daily view is turquoise waters, tropical cocktails, suntan faces, and smiling cruise staff instead of the grey, gaunt, smile less faces of cancer.
18. Easy to ignore aches and pains because my biggest worry is what time my next meal is
19. The secret that I have that every moment is the most joy and happiness I have felt in a long time
20. The secret that no one knows or can understand what my family deals with on a daily basis and all is replaced for one week of fun and few worries.
Now this week is reality to Hoag cancer center daily and the blood moon must have done a number on all cancer patients. I have never seen and heard so much negativity for a long time. (Or my week off had made me surprised to hear the pity pot stories again) Even my nurse comments to this crabby cancer patients to look at me because I’m smiling. I’m smiling because what else can I do. I refuse to join the crabby cancer groupies. My nurses beg me (literally beg me) to keep doing what I’m doing because it is working. The Hoag chaplain shakes her head in disbelief as she thought I wasn’t even sick. How do I do what I do, she asks me. I can only tell her that I compartmentalize most of my issues. I have no knowledge of what normal feels like. I have had glimpses over the years, but now as long as the pain is bearable, I choose to ignore it.
Frustration continues when we are told that the immunotherapy trial by EMD/Serono (Merck) decided to pull the part for ovarian cancer patients only. Even though, there was a list and I was on it. Even though, it was told to the doctors that the 31st was the day it was to be open. They pulled my not so popular ovarian cancer from the list of cancers to try with this new drug. My doc was not happy to say the least and escalated it to exceptions, VP, etc…He is concerned like we are concerned that my blood cannot take the constant beating of the chemo. Since that choice is out for now, I will not have a scan. There is really no solid plan B, but nothing I can do at this moment except take things day by day.
A reminder for those who have priorities messed up: enjoy today, listen to your kids, make the most of every moment, find your sunshine…please!