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For my bud Mick

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Hey Mick,

You know me man, haven't heard from ya and just wondering if you are doing all right. They seem to have gotten all the machines working where I'm at so I will be doing some catch ups this weekend. So I guess I've gotten a little reprieve? Yea right. An agony prolongment is what I have received. Someone actually said that to me, a reprieve. When I started writing this I went to your blog and caught up on your condition. Sorry about all the mucositis problems. But I see you are nearing the end, and my finish date is April 9th. Hang in there and try to get some calories some how to keep your weight up. I understand how things taste like crap. As always, thoughts and prayers are with you man, oh yea and superwoman too!

Best,
Steve

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

Yeah, were pretty much at the end here. 8 more rad days, but the rad Dr said if I continue to lose weight, he might suggest to the onco Dr to abandon the last chemo treatment. His feeling is that the rads are the primary treatment and the chemo is the adjunct treatment and can be left off. We'll see.

In the meantime Superwoman (Claire) is literally standing behind me as I choke down the 500 calorie smoothies, massaging my shoulders and talking me through it. Man I am extremely fortunate to have someone like her in my life.

Sorry for the lack of comm. I've been so tired because of dehydration. I've been getting 2 liters of fluids every other day and I pretty much want to sleep the rest of the time.

I hope you are doing well my man.

Best,

Mick

Hondo's picture
Hondo
Posts: 5604
Joined: Apr 2009

Glad to hear you are OK, there is nothing like a superwoman giving you a massage. I too remember choking down the food and having the wife use every trick in the book to help me get it down. Hang in there the finish line is just ahead.

All the best to you & the wife my friend

CajunEagle
Posts: 352
Joined: Oct 2009

Good Grief, I'm proud of both of you for even being coherant at this stage of y'alls treatment. I know I was a basket case during that time.....two tough son-of-a-guns. Hope they drop that last chemo session, Mick. They were going to do that for me, but changed their minds. I made it anyway. Good Luck, Guys.

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Good to hear you are knocking on the EOT door, Mick. Maybe not so good about the weightloss actually compromising your treatment- which is what skipping the last Chemo would be doing. Really should get the Chemo Dr.'s opinion on this matter. Seems logical that the full course of treatment is how the Drs. can best treat you. Hang in there, my friend.

kcass

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

Hi Mick & Steve,

Glad to hear the completion of treatment is near. Mick, I am a little concerned that the option not to get a PEG may compromise your condition and recovery. I had mine for about 8-9 weeks post treatment and could only get food in through by tube for the first few weeks, and then slowly started on the soft n mushy stuff. I kept a daily nutrition shake going in till the day before it was taken out. Every bit you get in helps, especially if it's valuable nutrients to help the recovery.

I couldn't have done what you guys are doing and I suppose just to let you know we wouldn't think bad of you if you decided to get a late PEG !!!

Hang in there regardless.
Scambuster

staceya's picture
staceya
Posts: 700
Joined: Jan 2010

Yahoo..almost done!!
For inability to deal with dehydration orally, I had to do 1000cc of IV fluid at night at home, this really helped. I also got 1000 cc every morning with the amifostine. It was just normal saline.

MaryRC's picture
MaryRC
Posts: 114
Joined: Feb 2010

Thinking about both of you! Treatments will be over soon for both of you and you will start feeling better!
Mary

delnative's picture
delnative
Posts: 452
Joined: Aug 2009

You're seeing the light at the end of the tunnel, and no, it's not an oncoming train.

--Jim in Delaware

ratface's picture
ratface
Posts: 1230
Joined: Aug 2009

One foot in front of the other, only forward, never backward. You guys are almost there.

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

How's the feeding/weight thing going? Many of us are concerned. You likely know I am one of the PEG-advocates, and my/our concern is most genuine. Please update us, friend.

kcass

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

I posted a mea culpa on the PEG on another thread by DebL. Basically I'm a dumbass for not getting one but that will be remedied on Monday. The Drs say it will all be fine. My labs are "amazing". My kidney numbers "have not budged" since start of treatment. My ALT (liver enzyme) numbers are in the normal range for the first time since who knows when - probably more than 20 years prompting my med onco to exclaim "See, chemo fixes everything."

Basically I'm a little dehydrated but have been getting 2L a day for a week now. With the tube in on Monday I should not need to have another via vein and my weight should stop dropping and maybe I can gain a pound or two.

I'm at a crawl here Kent. I'm doing all I can just to not quit because that's not an option. Believe me I have cried over this every day - the pain, the mucous, the constriction, so many subtle changes and pain that are just maddening and debilitating. ANYONE who goes through this goes through something traumatic and, being a therapist, I have a lot of therapist buddies who have my back and cry with me if I need it. I tell them I can't go on and they say I have no choice and they are right. It is hell.

5 more treatment days (last chemo on the 31st).

Weakly,

Mick

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

-your post on the other thread, Mick.
Glad to hear your Drs. say you can still get it put in. I was told by my Onco I had to get mine before the treatment, due to the immune system and chemo. DEB- PLEASE HEED MICK'S ADVICE. My chemo delivery was a bit different than your's, and my Onco said I didn't have a choice. Still, everybody knows the tissue of the mouth and throat are gonna take a likely significant hit with the treatment, and the PEG eliminates the margin for error in the oh-so-very-critical NUTRITION matter. Yes, you know I am the PEG advocate, Mick, and right now I am doing a bit of a burn for you- your Dr.'s shoulda known, and advised you to get it done, as mine insisted, before the start of treatment.

Mick- I would advise you request the "old fashioned" PEG, or at least inquire about it. I know others have expressed negatives over complications with the Bag-type. With mine: pop the top off the tube, pour in the formula slowly, then close the top of the tube= as simple as that. Took me less than 15-minutes/feeding. And, I used the 4.0 Jevity formula, which requires only 3-4 feedings/day, rather than the 7 feedings needed with the 1.5 formula. It gets the nutrition/ammo into you that your body needs to fight the best fight possible.

A bit of experience advice: my Onco people didn't know anything about the PEG- they don't deal with it. A local company, called Option Care, which only deals with outpatient-type medical matters, were the ones I was referred to. A young gal named Jamie was in charge of my kinda needs, and she sure knew her business. They showed me how to do the feedings, and got everything for me needed to get it done. Even delivered the formula to my house. When I initially inquired about things at the Onco office, it was like a deer with it's eyes in the headlights. So don't be surprised by the Onco folks.

PM, Mick. Very glad to hear from you- I know I speak for everyone: we were worried about you.

kcass

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

Hi Mick & Claire,

Sorry to hear you have been hit hard. We know exactly what you are going through brother and you will get through it. The PEG procedure is simple but MAKE SURE you are kept warm throughout your surgery - from ward bed to theatre and back. I wasn't - and came down down with pneumonia. You are very weak and your immune system is compromised so eliminate the chances of getting anything else you really don't need.

I note you mentioned you were crying at times. This is a possible sign of depression and no surprise considering what you are going through. If combined with feelings of loss and even that you won't make it, lack of good sleep - may indicate you need some extra support. If not already, let your Doctors know or have Claire talk to them. Let yourself be the patient on this one.

Thinking of you man. You are probably at the worst part now and it may continue a week or more once you've finished but YOU WILL BE OK. You will get through this and get to smile and laugh again.

Scambuster

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

Maybe you missed this part of my post

"being a therapist, I have a lot of therapist buddies who have my back and cry with me if I need it. I tell them I can't go on and they say I have no choice and they are right. It is hell."

I am an MFT trainee and have a lot of MFT buddies and teachers who are on me like a hawk. I am very fortunate.

Best,

Mick

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