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Second Chemo Session Started - Hmmm, Houston is This Maybe The Start of The Fun?

NewHere's picture
NewHere
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Had the second hook-up and now on the pump.  First few hours after disconnect of infusion was okay.  Came home and had something to drink that was in cooler but left out for an hour or so.  When drinking felt like I had something stuck in my throat as if a bit of food, but had not eaten in hours.  Took an aspirin about an hour before and sitting here trying to rationlize it as something else.

Then some tingling/numbness in toes.  First time went away in about an hour.  Almost felt like if you sit wrong and it falls asleep (toes on one foot only), back to same foot this morning with minor tingling/numbness and a couple of fingers.  Still thinking it is positional, though the toes if they fall asleep (before all this) usually wake up in minutes.  Some fingers now.  Keep on trying to think I am pinching nerves by sitting or lying in certain ways.  Have done that sometimes in past like when twisting back/pulling shoulders (pinched nerves type thing feeling).  So I guess I am still in semi-denial phase.  

Well made it through one and a few hours (this one added the Oxi).  And if it just stays like this level, I am fine with it.  But guess it builds up.  Yippee.  I will tell you this cancer stuff really can be annoying. Laughing  On the good news front I keep the doctors and nurses laughing Tongue Out

jalusa's picture
jalusa
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The feeling of something in your throat is the oxi.  I think it must be the cold hitting the epglottis.

It is hard to say with the tingling.  I have some neoropathy from chemo.  I guess it progresses with each treatment.

NewHere's picture
NewHere
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Went outside, no gloves, mid 30s (and I am good with the cold generally and like it), within 30-45 seconds.  Whoops.  

Lovekitties's picture
Lovekitties
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See Winter Marie's post about how to help relieve this issue.

http://csn.cancer.org/node/293092

She is long time warrior.

Marie who loves kitties

 

NewHere's picture
NewHere
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Next session I think.  So far not too bad, but only the second session and first with Oxi so thinking it may be the tip of the iceberg (or prepping for it emotionally anyway just in case)

Steve444
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Joined: Sep 2014

I'm glad you're enjoying yourself.  :)  Don't worry, soon enought the tingling in your toes will go away and they'll just be numb and weak all the time.  If you live in a warm climate like I do, you just learn to kick your flops against the wall to get the strap between your lifeless toes.  Seriously though, hang in there and keep your doctor up to date on your side effects.  It helps them decide when to pull back the Oxi.

NewHere's picture
NewHere
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Almost all the time, even in winter unless there is enough snow so really not easy not to wind up in snow, so that sounds great!!!  (kind of :) )

Keeping tabs now, have a feeling it is reaction.  Left foot has been constant now today.  Totally livaeble, no worries and hoping it goes no further.  But I know better.  Dang.

Trubrit's picture
Trubrit
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I had the lump thing in the back of my throat and also at the breast bone. It was so hard to swallow, but my Oncologist told me there was nothing there, just the sensation. 

Dont' you just love it! All these wonderful side effects and not knowing which ones are going to get you and which ones you're going to escape from . 

I was lucky (at first) with the neuropathy. No numbness or tingling until after chemo (FOLFOX) and then WHAM. I was on the 5FU when it hit, and I think it only happened because I had to have my meds upped after my pump broke. I still have it in my feet 18 months later, though it is starting, just this past month, to get better. YAY! 

Its hard, espeically when you're going through it, but its really great to be looking back on it. I pray that you will be looking back on it, and never having to deal with treatments again. 

Sue - Trubrit

NewHere's picture
NewHere
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I was expecting to coast a few sessions at least Laughing  It is like playing the lottery.  Is it cancer?  What stage am I?  Will I get the side effects?  The time between things seems to go forever with the wait.  Sort of just want it done.  There is the block of time for the next six months with "Hmmmm there could be scheduling issues."  LOL

Glad to hear your neuropathy is starting to resolve.  The list that you had of reactions sounds like anything that is possible was going to.  

My Dad had some various things going on and he was the poster child for adverse reactions.  I am the opposite normally.  Was hoping, and still do, that this overall will head that way.  I will not go outside without gloves though.  Was told the sensitivity is usually day of infusion and 5 days.  Nurse made it more like no ifs, ands or buts, whereas I was under the impression there was a c--p shoot in this part of the games.  Kind of bummed there a bit since I  Rolled Snake eyes before I even started the second infusion based on that ;)

Easyflip's picture
Easyflip
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cumulative, it's the oxi that has the worst side effects and I understand you only have to do 9, that's great. You're timing with the weather is good too in that we're heading into spring and summer. Just take it one infusion at a time. I remember thinking it wasn't as bad as I thought it was going to be, I feel like you might sail through. This is doable, the big thing is whether it'll work or not, best of luck with that. Stay strong!

Easyflip/Richard

NewHere's picture
NewHere
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Doable no doubt.  Going with one day at a time.  Found some good mediation music that I popped on during the session.  Need to try to make time for those things on other days and exercising (on pump detached days Smile)  Actually took a couple of short walks.  Except for the thing dangling from my side and feeling the port, I do not feel sick even with the little things.  Still playing it careful on lifting things though.  Surgery said 8-10 weeks and then port the same.  Just have visions of this thing popping out of my chest - the movie Alien has taken on a whole new meaning Foot in Mouth

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TheLadySkye
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Please be extremely careful of anything even moderately cold.  Cool beverages or even air from outside made that feeling of something in my throat turn to shards of glass and then couldn't breathe or swallow.  It's really scary, so please consider avoiding cool things altogether while on Oxali. 

NewHere's picture
NewHere
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I have left a bottle of water out on the counter, together with all other things I may want to drink. And even if it seems to be room temperture, I got caught with some that probably was still too cold.   Outside when cool, I feel it, and it is just barely into session 2.  (Just got disconnected a few hours ago from the pump.)

Going to take to weaing gloves if out in the evening.  Just stepped outside to look at the moon and felt it after a couple of moments.  

Was told after 5 days off, it is not as bad.  But I am guessins that as it builds up, I should not be counting on it.

Trubrit's picture
Trubrit
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The sensitivity to cold didn't last throughout my treatments. I think around treatment four, I could drink what I wanted and had no problem with the fridge.  Of course, it was replaced by tons of other nasty stuff. 

Sue - Trubrit

NewHere's picture
NewHere
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I am happy to stick with this sensitivity to cold based on the other things out there and what you had mentioned in that one post.

I am so happy you are past all that.  

Steve444
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Amazing and happy for you.  For me, the jaw pain when taking a bite of food lasted only about 10 seconds; however, the shards of glass when swallowing was there for 2-4 days after every treatment.  Once they pulled Oxaliplatin it subsided, but not before.  It goes to show that we're all different.  While I despised the shards of glass ( which I tried to sing in place of a Blondie song ), chemo brain was what I hated the most.  After about 5 treatments I started stuttering, couldn't think straight and my mouth started hanging open as I wobbled around.  I was very happy that all but the wobbling an neuropathy went away.

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Annabelle41415
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Sorry - but it accumulates in your system and it will get worse.  Be careful what you eat and drink.  Sorry you are experiencing it so soon.  I'm not sure if they put you on steroids with that but if they do you will experience days of not sleeping and then a crash after about three days.  It's a total wipe out so be aware if you are on steroids that could happen.  Hated that being awake for so long and not being able to sleep. If the numbness gets too bad tell doctor before next infusion because it can permanently stay with you like it has me.  Keep up the great attitude with the nurses/doctors.

Kim

NewHere's picture
NewHere
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A lot (for me) yesterday into today.  Would wake up for a bit here and there, but then slept.  Not exhausted, could do some things if I felt like it, but preferred sleeping.  ALso got a bit cranky or cloudy, not sure if over slept.  Took a nap for an hour and a half after I got home from pump being removed.  Feeling okay, but for sure seems like a drain.  Even typing now I feel a bit tired.  Nothing horrific, but just want to lie down and watch TV.  

I need to check what goes into the initial infusion in terms of steroids and anti-nausea.

Also started developing a rash on chest and face, photosensitivity kicking in.  

This is all throwing a wrinkle into my plan of getting about half way through and an easier countdown Laughing  I am guessing it kicking in so soon is not good, even though I read it varies from treatment to treatment and person to person, well just bracing myself.

But by the same token being here has helped me each step of the way in terms of being prepared for what could come, so I am not devestated, disheartened or the rest.  Just heading into probably being on the shelf a bit the next 5 months (modern math, since I am unplugged from second session and each session is two weeks, I figure I am a month down ;) ). Okay 5-1/2 months.  

Got NetFlix and other things.  

The strange thing is feeling like I am not trying enough and taking advantage of this just to chill out.  Other than feeling the port and seeing a bunch of scars I feel fine and that I am being a bit of a slacker Foot in Mouth

 

Steve444
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Joined: Sep 2014

The fatigue and tiredness is expected.  I see several people talk about how they worked through it and did fine, but I was in bed much of the time most days.  I was always so tired with not much motivation to do things.  Don't feel you're making an excuse to be lazy, it's just part of the deal.  The drugs do it to you.  Dealing with the pump and lack of sleep catches up.  Rest, take the time you need, start doing what you can in spurts.  I would (and still do) have to pace myself.  I can do something for an hour and rest for a couple or I can push myself all day and be wasted for 2 days.  I tend to be stubborn and hit the latter more often then not.

i also had the red rash/flushness on my chest and face.  It would typically go away in a day or so as did the fever I would develop.  They also didn't tell me to stay out of the sun up front.  I got red from the sun at times, but also got incredibly tan as I swam and lounged around.  

I hope things start to get easier, but more importantly I hope the benefit of the treatment is evident and outweighs the bad. 

NewHere's picture
NewHere
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This session seems about the same or a little easier.  Slight tingling.  Sip drinks slowly and I am okay.

 

3 down, 9 to go.

John212's picture
John212
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I've been absent for a few weeks - a longish story - so I'm glad I was able to get caught up on your progress here. All of the things you're experiencing are common with oxaliplatin patients. For me, the jaw pain when eating disappeared within a day or so of pump disconnect and then it went away completely around the mid-point of my treatments. Same with the shards of glass feeling in the throat, so I wonder if they're somewhat related.

I noticed the first bit of cold sensitivity my very first day on the pump with 5FU, and it was startling. Last March in Chicago, so it was probably in the upper 40s in the evening. I stood outside talking with a friend for a few minutes after a meeting, and when I got into my car I could feel tingling in my fingers. I'd bring this up with your oncologist and ask him/her about strategies for minimizing the onset of neuropathy. There are some techniques available that have shown some promise, such as wearing ice-cold mittens and foot wraps to force the blood away from your extremities during treatment. I know there's a strong Integrated Care unit at Memorial Sloan Kettering so they may well have some answers for you in this vein. Don't let this slide: attack it now to minimize the long-term damage.

 

 

NewHere's picture
NewHere
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Seems where it starts becoming normal again.  The Friday/Saturday are the real tired days.  A lot less tingling in the fingers and toes compared to the second one, or so I think.  Couple of new things, the metal/cool taste/feeling in my throat and abdomen.  Small sips of room temperture drinks seems to be okay.  But need to be small.  

The upper 40s was where I had the reaction, on round 2, to the cold in the hands and toes.  And it happened extremely quickly, under a minute.  The ocologist seems to be generally of the mindset of dialing things back if the symptoms get too severe.  His goal is 9 sessions with the Ox, 12 altogether.  After 9 he thinks the risk of neuropathy issues far outweigh the incremental benefit of the Ox in the mix.

I need to call the Integrated Care to see what they can add.  My oncologist has no issues with those things as long as it has not shown to be detrimental.  So things, such as huge does of x or the rest, can be issues.  There is also another doctor who works in integrated oncology I will try to see.

Yolllmbs's picture
Yolllmbs
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same reactions.  My tiredness came the day after the pump was removed.  I've been finished with chemo for 6 months now.  I smile when I read your posts.  I remember posting in the same way.  It's so exciting to see those numbers go down!  Good luck with your neuropathy.  My neuropathy got bad enough to stop treatment in round 9.  ( I was supposed to have 12).  I do still have the tingling in my hands and feet.  On occassion, I will get sharp pains.  I take lyrica and that helps tremendously.  I have the constant sensation that I'm holding a crayon with my toes.  It's just an odd sensation.  I lose my balance easily but honestly I wasn't graceful before.  All signs of pain in the jaws and cold sensation are long gone.  Pretty soon, you'll be sharing your story with those that are just beginning.

 

Best,

 

Yolanda

NewHere's picture
NewHere
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Everyone here has been great.  I started "paying it forward" in the hospital two days after the surgery and in the waiting room for some people I have run into more than once who had concerns.  The example set by everyone here is one to try to emulate to as much as possible.  :) 

NewHere's picture
NewHere
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Made it through 4 so far, number 5 hook up next week.  All the things are lasting longer, but managable.  Ordered some things for the feet, the insoles and some other massage type items.   The tired part is building up and lasting longer.  The pattern is the day after the disconnect, day 4 of the two week cycle, it hits.  This time I slept a good chunk of two days. Still thinking I am being lazy and blowing things off, more so as I approach the 10 day mark, but even yesterday just crashed for a 3 hour nap.  Oh well.

On the good news front, I get hooked up on Mondays and Memorial Day is coming so had to arrange the schedule.  So will have two 17 day cycles instead of 14. The Onc said he prefers slightly longer interval rather than shorter.  Will be at the half-way point and I am looking forward to it as a vacation or sorts with some extra good days.  One victory at a time Sealed

Trubrit's picture
Trubrit
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(Thats a song I believe)

I remember feeling guilty for being 'Lazy'. Once I did push myself, and fell over doing the dishes. 

Sleep if your body wants to sleep. Crash, if your body wants to crash. I doubt there's a lazy bone('s, Sleeping in the Sun' Thats another song) in your body. 

Keep on keeping on. You'll be past this and looking back, soon. 

Sue - Trubrit

Easyflip's picture
Easyflip
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Time to take a break and go to Margaritaville, if you can take the cold drink! Lol

Easyflip/Richard

NewHere's picture
NewHere
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Today it is easing and having water with crushed ice.  YES!!!  Margarita sounds good.  Maybe sometime in the next couple of days, though have not been drinking during this.  But one margarita isn't going to be that bad.  With the stuff they pump into me every other week, a drink isn't going to do much damage :)  Considering a beer this evening for the hockey game.

One thing for sure, Sunday night have a lemon ice ready to go.  Love them and figure the night before is a good time.  

NewHere's picture
NewHere
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For sure.  When people ask, I tell them I really can't complain.  And in the grand scheme of things, I really can't complain.  I do not recommend this for people's "to do" list of course, but I have one person who is recently diagnosed who I have been letting them know, it is doable and beatable.

Passing on the all good things from here to others.  As mentioned more than once, everyone here rocks and I am so glad I found this place.  

JanJan63's picture
JanJan63
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The neuropathy is different for everyone. I was like you for the first few sessions and then I got a lot worse. It was winter here so that didn't help. I found that even the handles of the inside doors in the house would make me jump. The feeling of swallowing small rocks was the worst, though. I'd get it on my face just walking to my car after a treatment. I remember one day losing my parking pass and having to get out of the car trying to find it and my cheeks prickling and I was crying. Finally, I got in my car and quickly drove out while the gate was still up behind someone else. Within minutes I found my pass after I got out, of course.

I hope yours gets no worse. I'd had chemo in the spring but without the oxy and had no side effects whatsoever.

Jan

NewHere's picture
NewHere
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I think after the second session I had something similar.  Walked maybe 100 feet back and forth from the car to post office and it wasn't that cold.  Sat in car wondering if I could drive before it subsided.  But for about 3-5 minutes was considering calling people to help.  Tomorrow is going to be in the 80s here I think and heading that way for the week.  Would be a good week to have a cold beer and relax, but for the obvious ;)   Tonight though is lemon ices night for sure.

Easyflip's picture
Easyflip
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your avatar. I have a saltwater reef tank. It's been fun having time to take care of it during the off time during my cancer. Have a nice vacation!

Easyflip/Richard

NewHere's picture
NewHere
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Trubrit mentioned doing this, and guess it is better than generic.  Reminds me of good times for sure and looking forward to doing it again.

Is salt water a banned word?  Figured it out.  Leave a space

My big vacation in the near future is the two 17 day cycles, got a feeling not much real ones until this is done.  Not a big deal, just counting down then figure out a good one :)  (Well figuring it out now.)  

How big a tank do you have?  I know salt water tanks take a good bit of work to keep them going properly.   

Easyflip's picture
Easyflip
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30 gallons. It's called a nano reef. Fish plus lots of corals. A fun hobby!

NewHere's picture
NewHere
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I can stare at fish and coral for hours and go back and forth about getting a tank.

Cannot wait until I go diving again.

Trubrit's picture
Trubrit
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It makes me want to type saltwater six times just to see the asterisk. Really!

I am on vacation right now. Oregon coast with my husband. I know there are some people who go on vacation during chemo. It would have no wrked for me, because of the bathroom issues. You could try a weekend break if you thought it would help you. 

You're doing well, and those chemo's will soon be behind you. 

Sue - Trubrit

John212's picture
John212
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I didn't feel like doing a whole helluva lot during my chemo treatment period, but I also wasn't miserable - just lethargic and tired all the time. Somewhere around treatment #10 I flew back East for a high school reunion (class of 1850, it felt like). The timing was excellent, as I returned a couple days after the reunion and then went in for my scheduled infusion the next day. The flying and airport waiting didn't bother me too much, though by then my feet were always sore when I walked any distance so I just had to grin and bear those interminable airport terminals. I'd say that as long as you can stand the idea of going out to the hardware store or to see a movie, you should be able to take a relatively simple vacation trip. I wouldn't advise trying to do any mountain climbing or an eating tour of Thailand, but it could do your spirit some good to see a different set of four walls for a few days.

sflgirl
Posts: 220
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i have a tattoo of Carpe Diem.  It's much more significant now than when I got it as you might imagine.  Go on vacation (I have 2 planned this year). Worst that can happen is you lose a security deposit, best is you get to go on an uplifting life affirming vacation with people you care about.  Own your time.

 

NewHere's picture
NewHere
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Playing it one day at a time right now for things during the sessions and figure if worse comes to worse, maybe pay a bit more for air if I can swing it.  Carpe Diem indeed.  Been using that term a lot lately.  Picked up a new lens for my camera that was a bit pricey.  Figured what the heck, traded in an old lens.  Plan on trying to get out and do some local shooting when I am up for it.  My big passion is UW photo and videos, though I also love above water.  Going to find places where I can get good photographs of wildlife and landscapes.  May try during the weekend.  Figure Thursday and Friday will be sleep days if the pattern holds, but then hopefullly 9 good days in a row.

NewHere's picture
NewHere
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My cousin and family are heading to the Carribean to a place my wife and I love.  We were going to tag along, been thinking about it for a couple of years and planned on going until the January news.  Anniversary of us meeting, give or take a week or two.  But we do not get a chance to hang with our cousins enough (they are left coast) so would be fun.

Looked into travel with the Port and TSA issues.  The timing would be good in terms of chemo session timing, but it would be about 6 hours travel, give or take, and not many flights back if needed.  Will play it by ear and see how the next couple of sessions go.  Perhaps a last minute decision.  Of course scuba diving off the table :)  

Been making small runs and actually went into the city for a Rangers game.  Does take a bit more out of me, but when they come up I got to try.  Thinking of also maybe a road trip to see my niece and nephews.  

Weds the 5th session gets disconnected.  :)  The next big thing is a scan sometime after the 6th.  But I am chugging along..

Steve444
Posts: 105
Joined: Sep 2014

Some time off is always fulfilling.  When I was 3.5 months into chemo I took a 6 hour flight for a family issue. The plane ride wasn't too bad since we're already used to sitting that long for chemo sessions.  It was good to see family and worked out well with treatment as my next appointment was the day after I returned.  I did get tired quickly and with exhaustion comes the balance issues and stuttering.  If it's in a beachy place, rest should be plentiful and the tan comes quickly on 5FU.  :)  I'm headed to an island in Mexico in a couple days toting along my camera and a couple lenses as well, plan to dive for the first time and film some underwater.  When I come back I start my two month long SIRT treatment.  Hang in there and try not to miss out on enjoying life.  Good memories and experiences help push out the bad ones. 

Of course, the other side of this is that your immune system is probably compromised, so you need to weigh that in as well...

NewHere's picture
NewHere
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Another diver with the photo bug :)  

Going to see how it goes, got disconnected yesterday, thought it was okay but the cold is really getting to my hands this time.  Stepped outside, 63 degrees, and hands started burning and got tired.  You know the drill....may be a day to just hang out and rest.  A tan from 5FU another benefit of chemo :)  

Love going to Mexico, have done a lot of diving there.  Going to Isla Muejeres?   One day I need to get back there when the Whale Sharks are coming through.   Agreed about the memories and trying not to focus on the bad things.

Right now my blood work is still okay, nothing bad on the last test before the last session.  Each on down is one less to worry about.

Have a great trip and looking forward to seeing some UW shots, love seeing those.

Steve444
Posts: 105
Joined: Sep 2014

You called it, I am going to Isla Mujeres for two weeks.  it'll be my 4th time.  I have never dived before, but it's always been something I wanted to do since I was a teen.  I'm sure you can relate to the strong desire now to start hitting those lifelong desires.  We're a bit early for the whale sharks this year, it is one of the things we've never done and still want to do.  I'm glad your blood work is looking good and still really hope you're able to take some quality R&R.

NewHere's picture
NewHere
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That is where I had my first dive.  When I first went there, there was nothing on the island.  You had to grab a ride with small fishing boats, no ferries.  Cancun airport had one baggage track.  And it really was not that long ago.  Love the area.  I actually saw a whale shark on a dive a bit further south, completely wrong time of the year out of nowhere.  Truly amazing.

Scuba diving is amazing.  Enjoy it.  Do not worry about going deep, so many things even on the shallow end (and dives last longer also).  It is good you will be there two weeks, you have a chance to ease into the diving a bit.  There are various classes for Discover Scuba, some last for a couple of hours before going in.  When I was there had a couple of days in the pool and the instructor was great.  He saw me watching the class he was teaching (it was something I always wanted to do), and he saw it in my eyes :)  

That was about 20 years ago or so.  And I am going to get back into the water with my stuff again when I get past this :)

Enjoy.

beaumontdave's picture
beaumontdave
Posts: 1005
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Had the same issues as you, cold water felt like an electrical shock on my hands. I was okay to work on the Folfox, but I messed up the pump line into the cath, twice. That's a trip to ER, where they fumble for a while trying to replace the set-up. I did 12 rounds and the neuropathy lasted over a year, but diminished as time went along. Can't imagine what might "pop-up" on your trip, but you know you best. Keep chugging and have that margarita, easy on the ice.

NewHere's picture
NewHere
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This round agan.  Just need to realize I need to give it a week.  Ordered a soda without ice, but they did not hear correctly.  Touched it and burned like crazy.  So grabbed a bunch of napkins and was careful.  Was interesting that the cold did not really trigger the glass in throat feeling.  Seems like each time brings along a different surprise of reaction.  Guess it keeps it interesting Cool  Glad to hear you neuropathy is going away.  

Will probably go for maragaritas straight up and not frozen for the forseeable future when I get around to having one.  ;)

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