Explain the pain:

As I type this I am sitting on my brand new furniture, in my brand new living room, in my brand new apartment. Although I had devilish fevers all weekend, again my brother, moms, sister and my moving SAVIOR, Melissa (in the above picture) were able to move EVERYthing in one hot-steamy weekend. While I spiked 102 and 103 fevers. It's nice being surrounded with people who just keep tackling one things after another for me. Needless to say, I'm a very happy girl surrounded by Ikea furniture, bamboo, and my books. :) The next post, I'm hoping to post a video of the newly fresh-painted rooms, and the apartment since it's definitely a 'healing' place... and I'm looking forward to spending my time here.

This post is to clarify some things about the treatment I'm receiving: SGN-35.  A lot of wonderful people, ask me how I'm feeling. There's never really a perfect answer for this question. Usually I say, "Today is a good day." Or "This is my bad week." I just wanted to clarify what exactly my bad week is, and how this whole process works. If that's okay with all of you :) Also, it's good for other people who are on this treatment to know that these symptoms/side effects are possible.

The treatment is a three week cycle. So, for example this thursday (July 8th) starts Day One of my three week cycle. After my treatment I have my 'Good Weeks'... Almost about two solid weeks that I feel decent enough to do something in 3-6 hours of time, or have movement, hold conversations, be vocal, participate in society, start YOGA (next week!), and basically do AS MUCH as I can in those 12-13 days of time. Then my "Bad Week" hits. This month, it will hit....around July 21-22nd. One of my friends recently said, it just feels like you sounded great a few days ago. And yes, that might be true, but I'm here to try to explain the pain of my bad weeks. When they hit, things dramatically shift.  And although I might have a good day in my bad week, it usually means I'm really tired of laying in bed, so I force myself to do things, even with 103 fevers.

So, what does a bad week entail:

• If you have ever had the flu. It is basically like having the flu for a solid seven days.
• I start with high fevers, usually 102-103. Sometimes, if I'm lucky they go down, other times they don't. These are the times people usually don't hear from me... just because, I'm so exhausted in trying to beat down these fevers, that I can't focus or think.
• Vomiting. enough said.
• Pain, I'm here to explain the pain because... oy vey. It hurts. Sometimes a combination of pain meds and muscle relaxants help? But usually I have 2-3 days where I just literally can't move because my muscles and bones ache so much.  A lot of people compare this to Fibromialgia, but to the 10th power, and it doesn't stop... until I receive treatment again.

And that's where the cycle ends. This 'Bad Week' ends, somehow Di or my mom drive me into New York, I receive an infusion. And, presto -- my two 'Good Weeks' are back. I hope this clarification helps all of you, so now when you ask I can just say "eh. 'good week' or 'eh, bad week.' Makes things easier for me :)

So, I'm headed to New York on Thursday. Even though the infusion reactions are pretty violent themselves, it's nice to know... I have some good days to look forward to. Some good, BALD, days may I add (by next week) too. The SGN has pretty much destroyed any hope of hair left. So, the buzzers will be coming out next week. 

Let's hope I can still rock that bald look ;)

Hope everyone had a wonderful 4th of July. 

I'll be posting soon on one of my good days :) 

And, showing you this BEAUTIFUL apartment that I am blessed to be living in. 

Lots of Love,

B!