Last we saw, our heroine was getting her mojo back. Her hip and back pain was gone. She started a new chemo with mild side effects and no hair loss. She was on her way to an iron infusion before sailing away on her family's annual cruise to the Bahamas this past weekend. Life was good. Well, life is still good, but in the past week, life has been experiencing more challenges. Again.
Last Wednesday, I received my 2nd infusion of Gemzar. When the bloodwork came back, it showed my Hemoglobin (red blood cells mostly) was 8.4. Mine always hovers around 10 or 11 so this is the lowest it has been. Since I already had a "chair" appointment on Thursday for the 6 hour iron infusion, the doctor gave me the choice. Did I want a blood transfusion or the iron transfusion?
How the H-E-double-hockey-sticks should I know? Apparently, another miracle of my cancer trip has been that I haven't had to do a blood transfusion in all of this time in treatment. I was a bit freaked out about it from the nightmare stories of the 80's and since I've never had one before. MD Anderson has their own blood bank that they use and obviously, they do blood transfusions for cancer patients with low blood cell counts all the time.
Since the nurse wouldn't give me any guidance on which one to choose, I went with the blood transfusion. This scientific calculation in my mind was based soley on the fact that a blood transfusion of 2 units would take 4 hours of my time, while an iron transfusion would take 6 hours. I'm not proud.
But, it turns out that the blood transfusion was the way to go. Afterward, the nurses were saying that was the wiser choice. It would give me energy and boost my iron at the same time.
Now, when I was on the phone with Frenchy/Lynda, Dr. Shah's nurse, from my chemo chair on Wednesday, she asked me what side effects I was having as a result of low hemoglobin. She asked if I was having heart palpitations, shortness of breath, or extreme fatigue. In the hospital, I was having none of those things. But when I went home that night... whoa nelly.
Extreme fatigue does not even begin to describe what I felt last Wednesday night. I barely had the strength to get up and walk. My husband ALMOST had to help me use the bathroom. I was so tired, it felt as if I would fall asleep, and never wake up. I'm not trying to be negative here, it just really felt like I needed to sleep for like... a decade. I have not experienced anything like this before. I've been tired, but nothing like this.
So our cruise was looming ahead and I was swirling around solutions in my mind for postponing it. There was no way I could go and just lie in the cabin the whole time. Somehow I dragged myself on Thursday to the hospital for the blood transfusion. I could feel the color returning to my cheeks that afternoon. I was hopeful that energy would be returned to me and slowly it was.
Friday morning came and the packing began. We got checked in and moved into our stateroom. But by the time dinner came, I had my head in my plate. Damn it, I thought. This is how the whole vacay is gonna be. Shit. Even Jake asked if I was going to be this tired the whole cruise. Broke my heart. Then I remembered that the motion sickness patch behind my ear had a warning on the box: may cause drowsiness. So I ripped it off right at the dinner table and immediately felt better and more awake.
Saturday morning came. Arrival in Nassau, Bahamas. Energy was mine! I had some onboard credits and in the morning used them in the cruise ship's spa with one of the specials they were running: 20 minute hot oil massage, scalp massage, aromatherapy facial, foot and ankle massage. It was magical. We disembarked and walked around the shops of Nassau. We took a taxi over to Atlantis and checked out the resort and aquarium. It was awesome. $565/per night--holy canolis.
We returned to the ship and relaxed before dinner. After dinner, we went with Jake to two shows and rock-a-roke--that's karaoke with rock songs for those that don't know. He was the only kid in the bar. We're so proud. Then we took Jake to the top of the ship for the midnight buffet and dance party. Where did I get the energy for this day? Someone else's blood, people. Thank you to everyone that gives blood--you are true heroes. Especially those who give to people like me that are rare with our 0 Negative blood type.
Sunday we went over to Royal Caribbean's private island called Coco Cay. I sat in a hammock and read. Mom went on the nature trail. Richard and Jake went snorkeling. Mom and I got beach massages. Hello, I am cruise ship spa girl now, don't you know? After dinner, mom took Jake to a show while Richard and I had some time together. We got a drink at the bar with Richard's Uncle Bob & girlfriend, Elizabeth, and took our drinks out on the deck and talked and talked. It was lovely. Richard and I then both lost $5 each at the casino. Slow down party people! Then we bought a duty free bottle of vodka-rockstar edition. It's a bottle encased in black leather and studs. Awesome. It'll sit unopened next to our last year's unopened vodka bottle shaped like a trumpet. We just love the bottles.
This morning we returned to Port Canaveral and reality. Jake went back to school and I'm getting ready for an appointment with a new specialist tomorrow.
Here is what the cruise kept my mind off of: During last Thursday's blood transfusion, Dr. Shah called to let me know that my last brain mri showed 2 new spots. That's right-2 new tumors, people. They weren't big enough to measure and the nurse practioner, Laura, says they are smaller than the tip of a pen.
Tomorrow I will meet with Dr. Ramakrishna. He is a (and I'm not sure of the order of these titles) Radiation Neurology Oncologist. Apparently he is one of the top in his field and MD Anderson fought to get him to come to Orlando. Apparently I'm lucky to be meeting him. I'm sorry if my enthusiasm doesn't boil over at the prospect of doing brain radiation again.
I'm hoping the spots are so small that he'll just want to watch them awhile. Richard and I would like to also meet with Dr. Bobustic after meeting with Dr. Ramakrishna. Dr. Bobustic is my brain specialist that has been helping us since the last tumors popped up two years ago. Dr. Bobustic prefers to manage things with medicine rather than radiation. So, whatever happens tomorrow, we are going to try to get as much information we can and weigh our options.
So, the liver is not behaving and the brain is not behaving. I took a chance getting off of chemo for the clinical trial and I would do it again in a heartbeat if there was a chance to help future generations of breast cancer survivors with new medicines and new options. I am hopeful that these speedbumps that I am experiencing this week will be smoothed out over the upcoming days as options with few or no side effects are presented to us. This is my prayer and if you would like, please pray for it also.
I love you all and will keep you posted on what we know when we know it. One day at a time. One hour at a time. One conversation with one doctor at a time. That's all we can do.
Muchos smoochos!
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