Only two of them are supposed to cause the nausea/compromised immune system, however every single one causes dizziness. Even the anti-nausea pill itself! (There is some irony there). It could be humorous to watch me walk after a couple days. Who needs a New Year's Day celebration when you have a dizzy pill prescription for a good time?
The main question I had for Dr. Wagner today was how much I should limit myself around others. His answer? "Avoid anyone who is sick or could be exposed to those that are sick.". That is pretty much all of society. So, if you would ever like to come say hello at my home, I will hide. I would rather not have to stay at the hospital for a couple days because I caught a "cold".
There is also more news that is very, VERY, happy. We got some results back from the specialists of the specialists on my tumor! They are actually good! Due to the slow growth rate of my tumor, it is officially being classified as non-cancerous. YEAH! However, it is still classified as anaplastic astrocytoma, which up until now has always been considered a malignant type of tumor. As a result, they will still treat my tumor aggressively as they would a malignant anaplastic astrocytoma. The specialists also did some genetic work on the tumor samples sent to them, and it turns out that my tumor cells had multiple copies of chromosomes 1 and 19 in them, which are not normal for my anaplastic tumor friend. This means that my tumor has hit the weird category. None of the doctors or specialists have ever seen this type of brain tumor before, so it will eventually be given its own name and classification. Now that is cool. James Dean, you deserve some congratulations for being rebellious, even from beyond the grave.
Are they gonna name it after you?
ReplyDeleteI wish! It will probably be named after one of the specialists or Dr. O since he discovered it.
DeleteI think your tumor was not weird, it was unique, as was James Dean. But non-cancerous is good! Will your name be involved in the naming of said tumor? That would make you famous of infamous depending on how you look at it! :) It looks like all your company will have to be via phone, e-mail, facebook and your blog. Keeping you in my prayers.
ReplyDeleteJust because you need to avoid sick folks doesn't mean you need to become a hermit. It's important for your physical health that you get out and are active, and it's super important for your mental health that you don't get cabin fever. Really! The boost to your spirits from keeping some 'normal' in your life can ward off anxiety and depression. Take it from me, it's ok to get out and do some things. You just need to keep the germs issue on the back burner of your brain. Here's a few ideas:
ReplyDeleteSee a matinee instead of an evening movie;
Go grocery shopping during the weekday mornings, when most folks are working;
Invest heavily in hand sanitizer. All visitors must 'goop up.'
Keep in mind the '3 foot rule': folks with sniffles must stay at least 3 feet away. And still use hand sanitizer. No physical contact.
Avoid salad bars and things in the deli case. Stuff that is prepackaged or shelf stable is okay. See the link at the bottom.
You can wear a mask if you want, but know those really don't do much to filter out germs. Mainly they just let other people know they need to give you some distance.
Take your temperature every day, just to get in a habit. Sometimes you can get sick without feeling you're sick. (The early warning signs of 'ick, I'm coming down with something' is your immune system fighting said bug. When you don't have much of an immune system, those signals aren't there or aren't as strong) Let your doctor's office know if you have a fever (generally over 100 degrees but they will tell you)
Wash your hands. Shower daily. Duh.
No petting zoos. Double duh. You also get a free pass from cleaning out the cat box or scooping doggie poop.
Wear gloves when digging around outdoors--like gardening or whatever.
Fresh flowers are ok as long as you change the water in the vase daily.
Here's the link from the Seattle Cancer Care Alliance. These folks do a lot of the stem cell/bone marrow transplants. You don't have to be near as stringent as those patients, but they are good guidelines.
I know that the science geek in you is going to get super excited about things like labwork and stuff. Those are all good to know and keep copies of, but don't stress out too much about them. Your care team follows your counts as well, and they will provide direction as to how you are doing and what precautions you need to take.
http://www.seattlecca.org/general-oncology-diet-guidelines.cfm
http://www.seattlecca.org/symptom-management-support.cfm
Continuing to think of and pray for you often!
I can say this, one thing I have learned during all of this brain tumor stuff is that nurses are soooo much more practical and knowledgable about life than doctors. Doctors may have the degree, but nurses have the smarts. Thanks Megan, this is really helpful!
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