Hi all,

Some of you saw that I posted my first fee treatment items in introductions -- I didn't have a lot of strength to reorganize my thoughts but wanted to get down some impressions and questions somewhere. Moving forward, I will try and do this from this branch.

So where to begin? Best, I guess, to catch everything up.

I started treatment on 3/27 with a rad to the head followed by the big dose Cisplatin later that day. Because I worried about the potential for hearing loss, we ended the day with several comprehensive baseline hearing tests. In general, I felt pretty OK about the treatment. Took on over 100 ounces of water and felt I was being ver proactive about doing my part. As they told me Day 1 wouldn't be too bad, I optimistically woke up, drive to work and sat down to out In a good 6 hours before Rad 2. Bad idea for me.

Even with the anti-nausea pills, the day after wiped me out and I was soon in near tears, alternating between waves of nausea and fitful sleep. Managed to get it together enough to get in my car and get home, took a nap and had my wife drive me to the rad.

OK, so much for that. So let's take it easy, I think. Saturday, the day it's supposed to hit pretty hard, goes OK. I can't eat anything, but I manage to keep down a lot of liquid and am feeling pretty good about myself. Weak as kittens, but on my feet (sort of -- I still sleep 2 hours at a time for every hour I'm awake).

I arise Sunday optimistic that I'm going to hold this thing together. Sunday I make the conscious effort to take on food and continue the 60 so liquid regimen. We make a smoothie and over the course of the day I manage to get it down. By 1500 it's a huge mistake. Incan't digest it, move it, drink anything, etc. the nausea and vomiting start up and I'm starting to freak out. So...we call down to the oncology department and they get me into the ER for a couple of bags of fluid, some more anti nausea medicine.

Not feeling particularly proud of that performance, but they did tell me it wasn't off the course for the first chemo. The event has soured my mood a bit, as I thought I could simply rise above any difficulty, but it also reminds me that I have to pay attention and do the right thing, even when it makes me feel weak.

My lovely wife sat with me through the entire time despite me being so exhausted as to be semi-lucid. She's the real strength!

Staying home today, hoping to recover. I am already down so many days at work, I 'm not sure how I'll get back to it when this is over. Tough to believe this is only the beginning, but I'm more determined ever to hang tough - I didn't put myself through chemo hell to quit now.

Thank you for your kind words and advice! The nausea is really a killer at every angle for me, but I know we all know it will be. Mostly, thank you for your lent strength. I know so many of you have done this, and made it, it helps me to know hat I will too.

Here's hoping today goes better than yesterday!

The Hellion

Hi Hellion, as the gastroenterologist explained to me, the nausea that one feels during chemo treatment has nothing to do with food or liquid intake, it is the central nervous system reacting to the chemo medication. (John cannot swallow at all and I was worried that he wouldn't be able to throw up if he should be hit by nausea during his drug trial.) Taking the anti-nausea meds when you feel the nausea coming on is better than waiting until you are actually throwing up. Get ahead of the nausea.

Sorry to hear the road got a bit bumpy. Some of us are more prone to nausea than others. We used to have a comment about "polishing the teeth from the insdie" regarding the violent hurling some of us did.

I believe I went through at least 10 different meds before finding one that worked. Many of the ones used today were just being used back in 2003. Don't be shy in trying any until you find one that works.

Make sure, especially with Cisplatin, you notify the doctor regarding any changes like hearing, vision, urinating, etc., as dehydration from vomitting will exacerbate things quickly. I am glad they got you into the ER and put some fluids in you.

Best wishes for a good day today...and every day!

I am sorry you are not feeling well. The last chemo I had knocked me on my butt too. But that was my fourth one. There are many different medicines they can give you to help the nausea. Don't be shy with your doctors. Tell them everything you are experiencing and they will help. Feel better soon!!

My first week of chemo infusion, Taxotere, Cisplatin, and 5-FU, in 2009 turned out to be disastrous, near deadly, and put me in the hospital/hospice for 6 months, paralyzed and blinded me, and postponed my curative treatment for over a year, which wasn't planned on happening anyway, but I'm still here, and had numerous treatments thereafter, which was nothing compared to what I initally went through, and why they threw the kitchen sink at me since. Hopefully you went through your worst, and only thing after hitting the bottom it up! You can do it!

It's common for most of us to decide early on that we will be the super strong, succeed at any cost, triumph over this by shear force of will kind of patient. And that works great until the really bad side effects start happening. And that's when the experienced road warriors advice starts to have meaning.

I have read time after time, that when it gets the roughest is when we start thinking in shorter time periods. All I have to do today is get through TODAY. I'll worry about tomorrow ... later. Sometimes it gets down to I just need to get through the next hour.

If it reaches that level, don't feel bad, don't think of yourself as a weakling or a wuss, you're just going through your initiation into the road warriors.

Hang in there, you'll get through this too.

Tony

Well and truly said, Tony! Thank you for all of us!

Bart

Im so sorry you have been struggling!!! Most of us have been down that road and its not easy at all. I have a tip that may help but I need to advise you its a bit gross.

For those who have a feeding tube and are dealing with throwing up, there is a trick I learned by accident. This works especially well when patients have super sore throats and can barely swallow a sip of water. Its unimaginable to think about puking when your throat feels like its full of razor blades. Go into the bathroom and lean over the sink and open your feeding tube. This can very quickly remove whatever you were going to throw up without it having to go thru your throat. Just remember whatever you lose needs to be put back in. This can easily become a vicious cycle leading to dehydration. If this is something you are going thru, ask your doc to write a prescription for hydration at least 3 times a week in the chemo lab. By taking a little extra time to get a couple bags of fluids can do wonders and help the patient to feel so much better almost instantly.

Hellion, I hope by now you are feeling a little more like yourself. We are in your corner thru this whole battle.

Best wishes!!!

ditto!

Thank you all for the support. I am feeling, in general, a bit better overall, but I was pretty worried there for a few days. To say I felt shaken is a bit of an understatement. The overall feeling was kind of rough between the pain of the tumor in my ear, the nausea, the constipation, and the overall sense of exhaustion, I felt like I was on a pretty ragged edge.

I was hoping I would sail through this with aplomb -- I guess I found out that I am not, despite what I may have believed, a superhero. Alas, now I must deal with it like a mortal -- one day at a time and one issue at a time. I'll tell you who is a superhero, though: my wife. She's been next to me the whole unpleasant time. Guys, I am so ****ing lucky to have her in my corner.

I can't say I feel great, but I feel a lot better. Only two more f the Cisplatin to go, so that's good. Thanks for reminding me that I'm not a total loser for struggling so hard. It can definitely feel like you are when you're laid out shivering, nauseated and in the ER getting fluids while the nurses and doctors gather round to tell you not to let yourself get dehydrated. For those of us that have always gone our own way, always handled our problems by ourselves, this whole thing feels very debilitating. It's good to know I'm not the only one that got his face kicked in by the treatment.

Still pulling myself together, but hoping to return to work tomorrow.

Thanks for the support!! I'll add more after another nap -- naps comprise a lot of my days right now

The Hellion