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Lori ,Gail B. ,C Dixon,Sonia !!

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

wan't to know about you!

plh4gail's picture
plh4gail
Posts: 1238
Joined: Oct 2010

Well...it's been a long month for me. I want to think I was managing life pretty well, but when I heard my onc tell me I think you're under reporting symptoms and then I started answering yes to questions like do you drop things, balance, messy writing and then began adding my own like tingly lips and metal taste and numb cheek and hair pain (on and on) the tears came rolling down as I thought I failed folfox. But in reality, I survived 6 treatments. Now I'm welcoming the end of it and in an odd way looking forward to beginning Folfiri. I know I already mentioned I will start this but unfortunately I've had two delays. Last Tuesday I was supposed to have my first Folfiri but my platelets were 84. I was to give it a week and start yesterday, Monday. So I go in all hopeful and yesss! My platelets are up, but my neutrophils dumped :( :( to 1.0. Onc said he would treat me at 1.3 but no way at 1. So I asked if I can try again tomorrow, Wednesday since they only have to come up a small amount and I can still get the pump disconnect on Friday.

On a positive note, no more sharp objects in my throat :)and tingly fingers are feeling better. I still have some of the symptoms but hoping they disappear soon.

And for those that remember my son was sick, he is finally doing so much better! Yeah! He tested positive for influenza B and man did it hit him hard. And I want to thank everyone for the suggestions. I tried many and most of them or at least checked into them. But I never got to the mustard one. LOL.

Sooo.....that's what I've been up to for the last ...hmmmm 3 weeks or so. That and being amused by Charlie Sheen's sad self destruction.

Love and hugs to my CSN family, Gail

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

Glad your son is better!! Enjoy the break from chemo! Do something fun!! Hugs!!!!

okthen's picture
okthen
Posts: 232
Joined: Jun 2010

Wow, Gail, I didn't realize what a tough time you were having! I guess I've been pretty wrapped up in my own (hubbys) situation. I sure wish I had offered a cyber hug or words of support! Here they are now!

Jacks onc told him today any Oxal s/e he's having should not get worse and when two years are up, they will be what they are. Crossing my fingers for both of you (and anyone else) that all the neurpathy dissappears wayyyy faster than two years.
Chriss

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

Just keep patient neutrophils will come up very soon!.
Hugs!

AnneCan
Posts: 3692
Joined: Oct 2009

I am glad to hear your son is doing better. I want to wish you all the best with your new treatment.

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

Hi Gail,

I hope your neutrophils come up real soon and you get onto folfiri asap.
Glad your folfox sideffects are easing. It gives me hope as well, got my 10th folfox in a few days and boy I am getting nervous about making it to 12. I just hope the numbness stop at my feet.

hugs,

Pete

Lori-S's picture
Lori-S
Posts: 1286
Joined: Sep 2010

hahaha

Most of my attention this last week has been on my son. He went blind in his left eye and it's been round and round to docs. Yesterday, we saw 3 doctors with the last one being a retina specialist. The first 2 told us his retina had dettached and that with surgery he would only gain back what he could see at the time of surgery. The problem with that is that he is totally blind .. happened in less than 3 days. We were shown an educational video explaining dettached retina and the surgery. My son just checked out. I couldn't get him to call his doctor (he's 23 and I try very hard to have him manage his own care as much as physically possible) but, he feels so defeated and said "It's just one more thing and it's a losing battle so why even bother?". I wouldn't settle for that so took charge yesterday and got him everywhere he needed to be. He's very weak and I have to hold his arm because his legs will give out sometimes but, he doesn't want a wheelchair.

We may have gotten lucky. At the retinal specialist, after long exams and an ultrasound of his eye, the doc said that he doesn't think the retina is dettached. He can't be 100% sure until he does surgery. There is a lot of bleeding in the eye and we have to find out why. We are hoping that surgery on this coming Monday will show what is going on and possiblly cleaning out and stopping the bleeding will bring some of his vision back. Please send some positive thoughts that we get lucky with this. He just bought a car a week or so ago that he saved up his money forever to get and hasn't even driven it other than home. I didn't realize at the time that he was losing his vision. That's just not right. Hasn't shown it to his friends or taken it for a spin or anything. I'm going to talk to his primary about his depression though I'm not sure that my son will take more pills. I feel so helpless when he feels defeated and wants to give up.

As for me ... I have appointments with onc and an MRI on Saturday to see what is going on in the abdomin better since I can't have contrast and the CT is showing new growth in a new spot in the colon. I am waiting for a reschedule of my colonoscopy that was supposed to be tomorrow but now I'm not sure how soon. Also waiting to start Xeloda or FOLFIRI until after surgery. I want everything done at once ... hernia repair, resection and reversal ... but the docs all seem to just want to take care of the new cancer. UGH ... Let's just do one surgery and be done with it. I'm really getting tired of all the doctors and some days am so tired of having cancer dictate my life that I just wanna walk away and go about my life as if it doesn't exist. But, those are fleeting momemts ... but still the thought is there. It's been a tough couple of weeks for me but, I'm still here .... You can't get rid of me that easy! hahahahaha

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

Hope you and your son get better soon, l pray for that!. Keep your strength and humor !
Hugs!

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

....that you are never given more than you can handle.

But, good grief, Charlie Brown, I think you've got your share + so much more to handle, I honestly don't know how you do it.....well, I do actually...you just do it.

We need to get you and your son off of this medical treadmill - I know your strength and tenacity must be wearing a bit thin about now.

Thinking of you, Lori - wish I could make some of this go away for you, but I'm just a mere mortal. I hope all goes well for your son, and then we can get back to work on you.

What kind of car did your son save up for? I hope he gets to drive it very soon.

-Craig

AnneCan
Posts: 3692
Joined: Oct 2009

I am so sorry to read this. Your son deserves a break + so do you. I hope your son will have great success with his eye, + I hope you also have good results. Stay strong!

Lori-S's picture
Lori-S
Posts: 1286
Joined: Sep 2010

I've just been kinda laying low and hoping to have some good news to report soon. I hate bogging the board down with so much not so good stuff. But, there's going to be a break soon ... just gotta be one in the pipeline.

Craig ... he bought a 2003 Honda Civic ex coupe ... got exactly what he wanted right down to the silver color and sunroof. He wanted a 2001 to 2005. Took about 5 weeks of looking so patience pays off. It's sad that he hasn't gotten to enjoy it but, I'm keeping my positive thoughts out for some good result from his eye surgery.

Everyone ... Thank you from the bottom of my heart for all your kind and loving words of support. You guys are the bestest!

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

Gosh Lori, I hope you are getting some help. I know you are strong, but you do need to rest and get rid of some of stress. I am praying that it comes your way. I worry about you. Wait, I can't stress :) I do. Please take care!

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

hi lori,

not much to say but sorry. your poor son. I just hope you both get some good health soon.

prayers,

Pete

plh4gail's picture
plh4gail
Posts: 1238
Joined: Oct 2010

Thank you everyone for the well wishes. I don't mean to disappear from here and I do check in once in awhile and make a few comments and well wishes. It's just been a little busy this last month. Lori....thank's for the talk the other night, I sure needed it :) :)! Now let's get you're surgeries done and I will gladly be the guinny pig for our Folfiri trip. Destination....NED!

Love and hugs to you all, Gail

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