Fuzzy Brain Syndrome:
If you’ve ever had chemo or radiation treatment you will recognize this phenomenon. This is where your memory becomes erratic and you have difficulty communicating your thoughts, or even thinking clearly. Once I was trying to say ‘
Nausea:
This is one of the most commonly-experienced after-effects. There are a lot of reasons patients lose their appetite at this time, and this is one of them. You should be receiving anti-nausea meds via your IV as a matter of course, but you can always ask for sometime more if you’re having a particularly strong reaction. I did have some nausea but it was fairly light in general. It always surprised me, appearing seemingly out of nowhere, often right after I used some of the special mouth rinses for mucositis (see next section), or at a simple sip of water.
Mucositis:
Mucositis is particularly uncomfortable syndrome. During it the lining of your mouth, esophagus, stomach and intestines begins to slough off, resulting in sores. This makes eating very difficult and will definitely affect your appetite. It also makes having a bowel movement painful. I definitely began to have a problem with mucositis about a week after the chemo was initiated, and those symptoms took about a month to disappear after the chemo was stopped. When the discomfort was high, I often asked for morphine, which was administered by an IV/syringe push, so that it goes to work quickly.
Reduced Energy:
There’s not much to explain here – the transplant procedure does indeed sap your energy. This is why trying to keep up with some exercise is helpful. Conversely this is a time when you may not feel you have the energy to exercise. I had real difficulty with this, so I can tell you that if at all possible you should try to work through it.
Loss of Appetite:
There are a lot of sub-reasons nested into this category; nausea, changing taste buds, dry mouth, and mucositis, to name a few. I had all of these and I ate almost nothing at all during the twenty-five days I was in the hospital. Iced fruit bars sounded good, but sugary things tasted terrible to me. Flour-based carbs – typically my favorite food profile – tasted bad and far too dry, and just about everything hurt my mouth. Everything tasted different, nothing tasted good, and eating was painful due to the mucositis. I managed to drink a little bit of milk on ice each day, along with a sip or two of Ensure™ but that was about all I could handle.
Diarrhea or Constipation:
Diarrhea is a common problem following high-dosage radiation or chemotherapy. When it occurs in conjunction with mucositis it is particularly uncomfortable. I often had to ask for a morphine push or sleep aide right after going to the bathroom because of the discomfort. I recommend keeping soft cleaning pads and squeeze bottles of water by the hospital commode, especially if you have a food allergy to citric acid, as the rinseless washes and wipes used often contain this and will start to breakdown sensitive tissues in the aftermath of mucositis.
You may experience both diarrhea and constipation on and off in the months following your transplant as your immune system re-grows (more on this in the next page).
Weight Loss/Weight Gain:
Most people assume cancer patients lose weight. However this primarily happens when your cancer is in a rapid-growth stage, and hopefully the growth rate will be slowed down or halted altogether by the transplant process. The side-effects of the treatment, though, can definitely affect your appetite and cause weight loss.
Conversely, as I described above, you’ll be getting a lot of fluids during your in-patient time and may end up retaining them. Like me, you may actually gain weight, even if you’re eating very little. Don’t worry – this weight gain will very likely reverse itself in the weeks following your transplant. I was prescribed a water retention med, and finally shed those fluids about eight weeks after the transplant.
Hair Loss:
As I described earlier in this chapter, you are almost 95% assured of losing your hair during the weeks following your high-dosage radiation or chemotherapy. It will grow back, but at its own rate. It was about four months after the transplant before mine started to come in again. And remember that your hair texture may be different than it was once it reappears. If you’re having a transplant during the cold months, get a couple of cotton or wool caps. Your oncologist’s center probably has them donated for free by volunteers. If you’re having a transplant during the warm months, think of it as free air-conditioning. Many people – especially women – worry about this unduly. Once you’re into the process you’ll find that temporary hair loss is a small thing when you look at the big picture.
Emotional Rollercoaster:
Your emotions may swing quite a bit after the transplant. In the mornings I felt better on average. Part of that may have been an attempt to seem well for my transplant team, who make the decision about when I could leave the hospital. Part was no doubt real. The transplant team would tell me my blood count numbers with each morning visit, and it was usually good news, with the numbers trending upwards as they should. However throughout the day and by evening I would often encounter low points, which sometimes coincided with some discomfort, and sometimes just appearing out of nowhere.
Like the fuzzy brain syndrome, emotional swings are par for the course with such an extreme medical treatment. The silver lining of this cloud is that like all other side-effects, they should diminish with time. More on this topic, as well as the others, will be revisited in the next page. You should document the after-effects you experience on the form below or in your journal, along with any treatment techniques (medicinal, relaxation, etc.) that work for you:
After-Effect: Date First Noticed Treatment Techniques Used: Result:
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