Hoping for a normal life soon

[MikeManess]

I would like to eat something that doesn't taste like wet newspaper.

After 10 rounds of Folfox, my taste buds are toast. Well, wet newspaper - I wish I could taste toast. Or bacon. Or eggs. Or anything else. I can taste - just a little - chocolate and vanilla. But even then, it has a strange aftertaste. Some people call it metallic, but I don't. It's a bland taste .. and everything tastes like everything. No wonder people lose weight on chemo .. you literally can't eat. I crave different kinds of food (roast beef, chicken, etc) but when I eat it I can't finish .. it tastes horrible. I aksi have almost constant nasal drainage .. usually it drains down the back of my throat, but sometimes my nose runs like it's running a marathon. And the claw hands .. yikes, they're back! And yes, it hurts to bend them right now.

My oncologist expressed concern that my chemo was not working, but based on my latest MRI it's working very well. A 10mm nodule in my liver is now 2mm, and a 15mm nodule is 8mm. That kind of shrinkage tells me that it is working. My CEA level continues to climb, but they're not seeing anything new on the MRI, so I guess something else is causing the climb. I'm not a doctor, nor do I play one on TV - but I am involved with my treatment and to my non-medically educated eyes, the MRI report looks excellent.

Feet? Gone. No feeling in the toes and after this latest round my heels are starting to become affected. My fingers are numb and nearing the point of permanent neuropathy. My oncologist said that my latest chemo is the last for Oxy. Maybe in a year or so my fingers will be somewhat back to normal. I can only hope. '

Massive fatigue. I was disconnected on Saturday and took a 4 hour nap as soon as I got home. Sunday, I missed church and slept - 4 naps during the day. Today, I played hooky from work and slept on and off several times. I have no idea if I can go to work tomorrow or not - I'll just have to wait and see. But even if I do go to work, I'll almost certainly fall asleep while at my desk. Always happens.

But despite all this, I remain optimistic. Surgery will be coming within a month or so to remove the nodules in the liver, and then additional mop up chemo to kill any nasty little critters that get stirred up by the surgery. And with luck, that will be that. Of course it could always come back, but staying alive as long as possible is the goal .. and hopefully some new treatments will come along before I need them.

I'm moving my home office downstairs near my bedroom so that I can work from home after surgery. I'm also moving a bit of my home workshop into a spare bedroom (much to the dismay of my wife!) so that I can continue to build my R/C planes during my surgical recovery. I hope my fingers are better before flying season.

I'm hoping for surgery sooner rather than later so that my life can start to get back to normal. I was diagnosed in February, so I've been dealing with this for several months now. Can't wait for some kind of normalcy to begin. I'd love to go to work 5 days a week. I'd love to go out to eat with my wife. I'd love to just eat and not become so nauseated at the taste of food that I can't finish what I started. There is an end to this - and I believe that it will be a happy ending. Just can't wait to be myself again!

[Soccermom2boys]

Hey Mike--

First of all, way to go on keeping up good spirits despite the challenges of living after ten rounds of chemo! Keep on keeping on, you're getting to that finish line eventually! I definitely recall the days of food tasting blah, so frustrating for sure. I hope normalcy finds you soon, it really is all we can ask for after all we endure with the treatments.

So happy to hear your nodules are shrinking-makes it easier to accept the side effects of the treatments. Good luck with your upcoming surgery and hopefully the chemo afterwards will go as quickly as is possible. It really is such a long, overall process from diagnosis until the last treatment--keep hanging in there!

I am four months post chemo (8 rounds of FOLFOX all with full oxi) and am still dealing with clawed hands when I wake up each morning and painful feet and very sore joints in my legs especially. I too am waiting for normalcy, you're not alone.

Please continue to keep us posted on your progress--will keep you in my thoughts!

[Nik Colon]

Have you asked about surgery sooner? I was supposed to do 6 tx b4 surgery, but only did 4, I kept asking about surgery sooner and was able to. Best wishes to you.

[DarknessEmbraced]

Sorry you are having such an awful time!*hugs* I hope that your surgery goes well and that your after surgery is quick!*hugs* Good that you are keeping a good attitude.

[fumaros]

You are strong. Hang in there and the time will fly by, then chemo will be done.
I also miss my taste buds, i cant really taste salt now, so i just add alot of pepper to food.
i am working from home tomorrow, it will be my third consecutive day of not being at work, oh well.
Maybe you can plan a trip somewhere nice, where you can relax. It will give you something to look forward to before the end of chemo.

[horizon]

It sounds like you have the right attitude if the face of this. Keep taking it day by day.

[HopeForJesse]

Sorry to hear of all the issues. Praying you will have a surgery date soon and continue to be encouraged by the good scans and fact that your tumors are responding to the chemo. Keep that sense of humor too - love the doctor/ tv line

[KElizabeth]

Congratulations on getting through the Folfox. Now it's time to kick some butt in the liver then heal. I think there is good hope your neuropathy will get better in less than a year. Mine took about 8 months to completely resolve, but it wasn't awful that whole time.
Good luck with surgery.
Hang in there.
KElizabeth

[BeansMama]

Just keep on taking it one day at a time. Hopefully your neuropathy begins to improve some. I know how frustrating it is to try and do things with numb hands and feet. I am about 2 months out from my last treatment with oxy, I haven't had any improvement yet.

Hope you are able to get to your surgery soon! Kick the last of this horrible disease out!

Keeping you in my thoughts and prayers.