So I went in for bloodwork on Wednesday and while my platelet count was pretty steady at 41K, Dr. Ram told me for the first time (I really don't pay great attention to my blood results) that my neutrophils have been trending downward for a while now and Wednesday's test had me at 1.1, the lowest I can be is 1.0, bummer... Probably explains why I've been feeling a little crappy lately. I had a scare on Monday evening when I developed a nasty migraine headache and was up vomiting all night, not fun. I think I may have contributed to it by roughing up my counter tops in another attempt to refinish them (this time it worked :) without a mask on and also not drinking enough water as it was hot out Monday. Anyway, it went away next afternoon but the lack of sleep all night took a toll on me and I've trying to catch up ever since. Going back to the neutrophils (basically your immune system count), I have to be really careful of avoiding situations where there may be sick people in a closed environment. I have to bring a thermometer with me to check for fevers and if I get one, have to go to the emergency room as per Ram. Again, bummer...
I personally am thinking/hoping this is just a little bump in the road and the neutrophils will rise a little removing me from harm and I can continue on this dose of RAD001. However, if in two weeks they've gone below 1K, Dr. Ram said he may have to lower my dose which of course will reduce the drugs' effectiveness preventing my disease from spreading.
Just when I thought I had it good... rats!
I guess I'll just be careful, treat my body extra special and keep the stress low while trying to enjoy myself. I'm almost done with my projects here at the house and from there, I'm going to take time to travel a bit I think, it's been a while. If the neutrophils are low, I may have to take some road trips which is no problem whatsoever of course! I'm thinking on my drive down to Florida this year, I'll go to the East Coast then follow it down making stops in places I've yet to spend quality time, perhaps like Boston, DC and North Carolina. Hawaii and the Northwest is on the horizon again too not to mention Europe (thx to my buddy Sean hopefully ;).
Enough about me, what I'm dealing with is nothing compared to the following three people. First of all, my cousin Rodney who lives with his wife Renee in Vancouver BC just advised the family that things aren't going so well with him. Rodney has Diffuse Large B Cell Lymphoma and learned that first and second line therapy hasn't worked. In fact, his disease has turned agressive and they're going to try a drug that I've had in the past with some success (Gemzar) even though we have different cancers. I'm now more certain than ever that cancer is definitely genetic as Rodney and I couldn't have lived further apart. Anyway, the goal is to get him to a point where he's strong enough physically and blood count wise to pursue clinical trials whether they're in Canada or here in the U.S. Thoughts are going out to those guys, hit's ya even harder when it's a family member dealing with a similar situation.
I also wanted to request prayers and good vibes from a couple of my fellow Hodgkins warriors. First, I just read Zach Rongers' Caring Bridge site which is written by his wife Erin. Seems as if Zach's symptoms are worse than they've ever been and like a lot of us refractory folks, has tried a lot of different treatments. They seem to be running out and to make matters worse, the guy is pretty miserable with itching, coughing, shortness of breath and energy. Hoping he can find something to knock back the disease a bit to buy him time for perhaps one of the new T cell studies that are out now. Another friend, Mike Reed is dealing with a couple of really tough scenarios. I think I mentioned him before but because of all the therapy and chemo Mike has had over the years, he's developed a blood disorder called Myodysplacia (sp?), which is very difficult to treat and wreaks havoc on his blood counts. It's difficult to fight two things at once (Myo and Hodge) but that's exactly what he's doing and my hat goes off to the guy. Both Mike and Zach have been dealing with this much longer than me and I have nothing but admiration for their courage in dealing with their physical and mental issues not to mention both have somehow kept working and both are fathers, pretty amazing.
Can't forget Rich, my step Dad who will be getting results of his PET scan tomorrow after they found a nodule on his lung. Hoping for good news here tomorrow of course. He already deals with heart issues and it'd tough I imagine to fight both but if anyone can, he can do it. The guy is a warrior!
Please keep him, my cousin Rodney and friends Zach and Mike in your prayers or thoughts. Really appreciate it.
Optimistically,
Chris
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