May 29 - June 2...
Just had a teleconference with my oncologist. He has a plan (pretty complex), that seems like it may work. We'll see. I have to go back to hospital at 6:00 am and start a new type of experimental targeted biological drug.
Just got back - long day dealing with a lot of new changes. We'll see how it goes. I feel like shit.
Pretty bad. This new huge tumor in my throat is killing me. They gave me new meds - if they work it should reduce this tumor within 10 days.
I threw up - can't keep food down
This new tumor has changed everything - came out of nowhere and now I'm experiencing symptoms I hadn't experienced before
Water is ok - that's about it
blueberries seem ok
I have whipped cream, but I wouldn't be able to eat it. Also, this is the first time I have lack of appetite - I'm just not hungry at all. I oushed myself today to put pounds back on and lost it.
Blueberries + Apples the best for ny tuoe of cancer. A & T cells
Literally, just trying to survive. I'm in a fight for my life and I'm fighting hard.
The doc is good - he has excellent bedside manor And very positive about every option
My perfect athletic body weight is 175. I was 195 when all this started. I'd guess I lost 20 lbs of fat + 15 lbs of muscle.
35lbs is A LOT. It's not good. I was able to stop it at 160 - 165. The problem is when the cancer starts eating your muscles.
Clothes too big, pants...
I cut a new hole further down the belt. Works fine for now. Much bigger fish to fry
Other things to worry about. I'll deal with that stuff when I'm on my way to getting better. Right now I'm still getting worse.
Yes, but I don't want to eat. I need for these new meds to shrink the new tumor before I can think of any of that stuff. Hopefully it works
Would vomit all of it. Cancer justvtakes over your entire body and changes everything. I constantly have a taste of metal in my mouth and everything smells like burnt toast - very common symptoms
I had to stop when I went to emergency. Health first - all that shit later. The problem is that I haven't turned the corner yet to getting better (we thought I was). I'm still actually getting worse. Going to take 10 - 15 days for the new "gene targeted biological" meds to kick in and do anything... that's if they work at all. We'll see - supposedly much better than Chemo or Radiation.
I am - fighting it all the way! My case is very rare + unique. All the oncologists were shocked that the cancer spread out of the lymphnodes and metastisized right below the skin level. Usually cancer stays in the organs when it spreads. This new tumor is a lump pokingbout of my throat like a swollen muscle.
It's very possible the 2 biopsies in 2 weeks disturbed the lymphnode tumor and spread it to my trachea (which is exactly where the surgery incision is). Biopsies, although necessary can be very risking to spread everywhere - happens to breast cancer people all the time
Been sleeping a lot today. Had early morning video conferences with the doctors.
Yes. In very bad shape today
Thanks, but I'm too sick to talk. Tumor is in my throat and cut off my voice.
Just trying to make it day by day. I've gotten a lot worse this past week, out of nowhere.
No. I'm on all kinds of strong crazy new meds. Kills appetite
I have plenty of food. It's the drugs + the cancer. I've gotten a lot worse this past week. It spread all over my body and chemo didn't work.
Yes, but the reality is pretty bleak. Before I couldn't feel it at all. Now I feel it everywhere. Not sure what's going to happen.
The problem is that it has spread all over at an unbelievably fast rate while on the strongest chemo.
My doctor just called me - he is a commited guy!
Well, not really. He went over the results of yesterday's CT scan with me. The original tumor in my chest lymphnode doubled in size. All of the metasteses doubled and the new tumor grew to 10x the size of the original tumor in less than a week. We'll see what happens, but this is starting to get seriously scary. The new drug is supposed to target the dual gene mutation I have, but won't know if it works for 2 weeks.
A couple of eggs. Everything tastes like metal.
Thanks, but don't worry about food for me. With the new huge tumor in my throat it hurts to swallow, tastes like metal and makes me vomit a lot. Before that tumor manifested itself, I was in much better shape. Going to be this way on the new drug for at least 8 - 12 weeks. We'll see then... Have a safe drive today!
I feel about the same as yesterday. Major pains in my back from coughing. The new drug is going to take a while to kick in and work its magic.
Nothing - just trying to survive one day at a time.
Thanks, but I'm just not strong enough for visitors right now. I was much better off before the 2nd throat tumor showed up. It's been downhill for me ever since.
A felt a little better today
I had egg noodles with butter. It really hurts to eat - like swallowing glass.
I'm below 160 now. Didn't talk to John - I haven't been able to speak for several days.
They were pretty concerned on Fri that I would need to go to emergency room again over the weekend - they set me up with all kinds of emergency numbers and contacts. I guess they're glad they never heard from me
I hit my head in the middle of the night last night. Was walking to bathroom, coughed so hard I passed out, lost consciousness for a few seconds and hit my head on the floor. Woke on floor and didn't know what the hell had happened or where I was for a few seconds.
A little bit - split my left eyebrow. I know my dr is going to see it over video at some point. I'm going to tell him I spent the weekend in Brooklyn at the riot throwing bricks at cops.
All of the strong drugs I'm on, the extreme exhaustion from lack of sleep for months, plus the cancer itself it's amazing I haven't passed out 10 times. Since this new tumor last week I can barely stand and support my own weight. I've lost all my strength. Sucks because it hasn't been like that until now.
Probably tomorrow. I know I have to go in to hospital for more blood tests this week.
They do all that already - vitamin supplements, etc. The main thing is if this new drug works or not. If it does, all these issues caused by the throat tumor should start going away. I definitely feel better today than the past 4 days, so seems like it's working.
OK. Mornings are always tough. Had a rough night, but I think I feel a little better today.
I just don't have the strength for visitors Michael. I've been in bed all day. No energy. It's going to be awhile before the new meds kick in and allow me to do anything other than rest. Will be nice if I start feeling a lot better soon...
Yeah - the chemo expert checked in to see how I'm doing. Unfortunately, I still have a week worth of strong Chemo running through my body
Thank you very much, but I just can't do it until this new med starts working. If it had been last week, a completely different story. Since the new tumor manifested last Wed I'm in a whole new world. Everything tastes like metal and feels like swallowing glass. There is no comfort from eating - it's ore like a horrible chore right now which sucks.
Not now I don't when it feels like glass and tastes like metal. Nothing tastes like it used to. You gotta remember, I have a secondary tumor the size of a walnut sticking out of my trachea. I can't even speak - it's wrapped around all my vocal chords. If the meds work, hopefully I go back to normal.
Not really - need the new meds to kick in more. I haven't turned the corner yet...
I can't breathe when I lay down. It's like turning off a valve,
cellie...
