Wednesday, May 26, 2010

'nuf already!

Down days happen and when I ponder what my days have become....sleep, few hours office, Ensure, Gerber's, Soup, coconut water.......hell any liquid combined with a sore throat we just cant get a grip on (although we have the other pains), stomach aches, bound up and the daily zapping sessions..............'nuf Already

Day by day!

Thursday, May 20, 2010

Lifestyle as we know it now

Alright, as I sit here in my chemo chair for my weekly intake of the chosen poison, I have reread a few of my recent posts and they all sound the same. Problem is, they are-things turned south beginning of last week and really not much else to report so thought I might try give some insight to how the general lifestyle has been effected for something different.

As you all know, we don't like radiation and there is no indication it will get any better, or easier, until it is pau, and even then, weeks of recovery. Hopefully however, it doesn't get any worse and we keep trying new drugs to assist me along. The newest challenge over and above the pain that seems to be here for a bit is communication. For now, speaking simply consists of a series of grunts and groans and in dire necessity, some form of mumbling. In person, I can point or write a note, but talking with Lisa when on the phone is a difficult chore for her I'm sure. That is a big bimmer but again, trying a new medicine tonight to see if they help the mouth sores that have caused the swelling of the tongue creating this dilemma. Crossing my fingures.

It also has drastically effected consumption of foods and fluids as Ive mentioned repeatedly. The weight keeps dropping and today I find myself down again to 210-a number that is light even for me and starting to concern the "professionals." No significant change in blood work to indicate malnutrition, but they see a trend and it is hard to get things down no doubt-Herein lies the biggest lifestyle adjustment I must work with -EATING. I know everyone around me frustrated as well as want to help but its not that simple and I tend to be the loner when it comes time to accomplish this task. It's just not fun nor anything anyone needs to witness to be honest. Case in point, it was my Aunts birthday the other night and she came over for dinner, something I no longer participate in formally. I did decide at some point when they were outside enjoying that I needed to get something down outside of the now daily Ensure ritual. This usually involves some kind of soup or liquid base that I add anything too I can to inject nutrients and it is not a pretty sight. I literally have to gag down whatever it is and hope the throat allows it-sometime it doesn't and therefore can be messy. Certainly NOTHING I want an audience for, nor anything I enjoy as it is painful and the flavor profiles I get to deal with are terrible. Believe me folks, nothing can be done except that I get down whatever and as much as I can, when I can and I feel terrible as I know peple trying to help. In this case, Mom came in to try and help but she simply can't and I tend to scurry away like a caveman as again, not into the audience. I feel bad as I know she feeling helpless-Lisa has had a bout or two with this too and it sucks but some things I jsut need to do alone-Sorry.

Further, along these lines, Ive even come to the realization that showers are a great way to hydrate so do enjoy them. . I can stand in the shower and take in whatever water I can and haven't a worry in the world if it stays down or not-there is always more and i can take my time drinking it in-LOL Again, lifestyle changes.

Attire also a bit of an issue as I have developed what I call my radiation lei. A perfect match to where a lei would lie around your shoulders except in my case, that coloring and texture are not flowers but actual burn marks. I actively treat with aloe as is recommended but they have become pretty severe burns, blistering and scabbing.

Let's see. what else???? I've mentioned the super thick saliva, again, keeping me laying low in private a bit here instead of showcasing myself as a 210lb drooling, spechless idiot. The Uncle Fester look that seems to be on standby with these individual blond hairs coming in sporadically is not my best look and.....Oh yeah-the fatigue has set in. This actually has a pleasant outcome. NAPS-not something I did regularly but they are increasingly necessary and I must say-I am already looking forward to getting out of this chair, going to the zapologist for number 19, a swing by the office and then....ahhhhh... this afernoons nap.

Lifestyle changes-guess we knew they were coming!

Tuesday, May 18, 2010

And now were 1/2 way there

Whew-at least I can say that but a tough road lay ahead. As mentioned previously, been fighting this pain all week and playing with different meds, unfortunately all to no avail. I'm usually OK and can tolerate my share but this continues to kick my ass. Swallowing is difficult but doable and it is just getting past the mouth sores that is still really slowing me. Not to be too graphic but we are now at a point where the salivary glands are deeply wounded too so am essentially choking on it as it is so thick and that too a challenge. And talking-near fricken impossible at this point.

Basically what this means is at a point where am having serious concerns if we cant get a handle on this pain thing as also dropped another 5 pounds this week. Loose too much more and I approach 200 and that will be a problem as I know it is not just a number, but have to sustain the weight so the body can heal.

Yesterday they swapped me off the useless meds I had over the weekend to a continuous dosing patch so crossing my fingers. 24 hours into however, although I feel great, it has done nothing to alleviate the mouth issues. I did manage to gag down another Ensure at breakfast and going to go retro with dinner...Gerbers. Hey it worked as a kid right and got to get creative! Actually have to give kudos to that one to Mom if it works-Keep you posted

Wednesday, May 12, 2010

1/3rd complete!

We might be but to state the obvious....Radiation burns are BAD!!! I have yet to find any relief as the thousands of daggers in my mouth and throat continue to attack every time I try to eat or swallow or even talk, yet a milestone has been reached today nonetheless. We have complete 1/3rd of this treatment cycle! My concern of course is we have ONLY completed 1/3 of the cycle and I need to find a means to temper these burns or another 25 exponential treatments is out of the question. The zapologist techs suggest I see what my nurse practitioner, whom I see tomorrow, might be able to recommend as far as a prescription so I am looking forward to discussing any options she may have. As it is now, talking has become near impossible, swallowing is done very slowly and forcefully as a necessity only and I've still shed 6 pounds in a week. (Not that I didn't pack on extra in anticipation of this but not the way you want to lose any weight believe me) I managed a couple eggs for breakfast although it took 45 minutes to accomplish and am currently working on a cup of soup. Again out of necessity only as food without taste that is this difficult to consume is just not very enticing.

As always-day by day!

Monday, May 10, 2010

Tides are turning

And what has arguably been a stellar performance beating the odds on the nasty side effects that come along with my treatments seem to be coming to an end. Today was only the start of the 3rd week of radiation therapy. or my 11th treatment (of 38) and I'm not very encouraged right now as this time, the side effects have begun to raise their ugly heads. The Doc told me "you may begin to have some complications due to the side effects after about two weeks of treatment." Well as advertised, in the last 72 hours thing have deteriorated rapidly. I noticed in the early part of last week that food was loosing it's luster but that was about it. I even sailed on Prima for Friday night races and felt fine. Shortly after we docked though I started to not feel so good and headed home. I picked up some Chinese soup for dinner but was barely able to put it down as my mouth was so sore and my tongue has swollen up like a prickly pear. And as far as flavor......HA!........NONE! Everything either tastes terrible and metallic or like sawdust. I can't even decipher the sweetness in Ben & Jerry's Heath Bar Crunch and that is usually sickly sweet. More of the same throughout the weekend although I did get out with the Mom's yesterday for a nice Mother's Day Brunch-for them, and day at the beach but not much relief to be found with my second day off treatments.

Today, we are back on the zapper and I am concerned as to how fast my condition has changed. I'm not even 1/3rd of the way through this and already having these types of difficulties so wonder how much worse I will be able to deal with. We'll just have to see what I can do to put food down as now cuisine and "lunch' or "dinner' are out the door for a while and need to focus on items that give me nutrients that I can actually consume as to not loose too much weight and strength-a bit of a challenge when water can be difficult-UUGGHHH

Thursday, May 6, 2010


Thought I was...............but apparently not enough. The zapologist was correct and the oncologist gladly took the blame. The Carboplatin seems to in fact seem to be what got me last week and the answer is hydrate hydrate hydrate-or if you prefer-DROWN. I'm still having a hard time with the Gatorade and Vitawater types but guess I'll need to deal with it, drink it and see how this week goes. He did bring up a good point in that when I was having the big boy treatments at Queen's, I was not only drinking as much fluid as I could put down, I also had constant hydration bags dripping in as well and that no longer happening so needs to be all on me.

Tuesday, May 4, 2010

Not us says the Zapologist!

I tell you all how crappy I'm feeling and for the past 2 days I feel great. Had my weekly check up with the actual radiologist (instead of the zapper tech's) and he tells me my recent ailments were certainly not caused by his treatments-they must be from the chemo. I had to laugh as he was too funny defending his territory and explaining everything in detail. Very glad he does explain however I thought it was odd that I made it through the big doses and now I'm having these effects from the Carbo-guess we'll just have to ask that department when I go to them on Thursday but for now-all is good!

Sunday, May 2, 2010

Bah Humbug!

Alright. we have to keep this honest right although I hate to ruin my streak as love the fact all of you always telling me how amazing it is I feel so good and always so upbeat. Uugghhh- I guess I can keep striving for that however it is official-unlike the chemo, I can say the radiation is starting to kick my ass and I am not happy. I'm only through my first week, or 5 of 38 treatments and this is the worst I have felt. The last few days I even busted into the anti nausea meds they gave me way back in February. My concern here is we figured I'd make it through at least 2 weeks before any symptoms started, if they did, and the fact I'm feeling like this now is not good considering how the radiation works on the body. Unlike the poison, which is passed through the system as fast as I could flush it out, the rays compound and builds on itself with each zapping session. GRRRR. Considering it is Sunday night and I've had two days off and still can't shake the feeling can't be good. Also, woke up this morning and notice the throat starting to act up too and that also of concern as one of the biggest problems with this treatment. There was one poor guy that came into the chemo room last Tuesday just for a hydration and electrolyte IV as his throat had completely seized up and onnly way he was getting fluids and nutirents. My biggest fear and certainly NOT the way to loose weight!

Time for that positive attitude you all tell me I have and thinking we'll just hold and stabilize right here. We can hope as still never want to see that train!