Coming out of the fog…

Happy Weekend, all! It’s a beautiful day, so I felt that i should take this opportunity to write a quick update.

After only 2 weeks of Hydrea the side effects I was experiencing were worse than the symptoms of the disease. Not only that but my platelets had dropped from 880,000 to 552,000. After a discussion with the NP at my hem/onc’s office we decided that it would be best to stop the Hydrea for now. I am already starting to feel a little bit better. The nausea is subsiding, and the brain fog is lifting. I still feel it, but I can tell that it’s leaving.

I’m still not quite feeling like myself lately though. One of the problems I’ve been having lately, is what feels like a very swollen lymph node on the left side of my neck below my jaw. It has been very painful. It actually kept me up a lot Friday night. Turning my head, swallowing, even breathing was painful. I’m not sure what is causing it, but if it isn’t gone by Tuesday I will probably go see my GP about it. Other than that, nothing is really new. The spleen pain is still problematic, I still have a lot of headaches, and fatigue, but I’ll take those issues over constant nausea, and brain fog any day.

I will go for another CBC on Wednesday and we’ll see if anything has changed since last week.

Not much else to add at the moment, so I’ll end this here.

As always, you are your own best advocate. If you do not stand up for yourself, who will?

Until next time,

Lina

The importance of being a partner in your own health care.

Hello ladies and gents. You may have noticed that I didn’t post last weekend…I apologize for that. I was not feeling very well at all, and just didn’t have the energy to get off my rear and get to my computer to type anything. This was a treatment weekend and as usual, I’m feeling pretty crummy…but I’m only a day late on posting, so I’m going to call that a win!

I’d like to talk a little bit about something I had intended to address during blood cancer awareness month, but didn’t get to…due to my slacking off toward the end of the month.  But anywho…here goes.

I know I talk a lot about being assertive about your healthcare, and I also realize that this is not easy for everyone. Doctors are our caregivers, and are trusted to have our best interests at heart. Now don’t get me wrong I have the utmost respect for doctors, and I realize that doctors went to school for many many years, and learned, and trained, and tested to study/translate data and treat diseases. Sometimes it seems that it can be difficult for doctors to see past that data and to the person that they are treating. This is why it is so important to be a partner in your health care; to be involved and informed about yourself, your progress, and the data that your doctor is watching so closely.  This makes it easier as a patient to know when something isn’t right. When something isn’t right, even when the data doesn’t show that, it is important for a patient to be willing to inform the doctor/health team about it. I personally feel that if you don’t feel that you’re being heard, then you need to keep trying. You are the one feeling the way you do. You have the aches, the pains, the general feeling of something just not being right. No one else is going to feel it for you. If you feel that something is wrong, it is up to you to make it known to the people in charge of your health care. 

As I have said many times before, you are your own best advocate. If you don’t take care of yourself, and stand up for what you feel you need, who will?

That is the end of my lecture now 🙂 I hope you are all having a good weekend, and are all feeling well!

Until next Saturday,

Lina