Horatio update: Post radiation results in

[Skippy]

Thanks for the updates,still remembering you in thought and prayer.

[TaraF]

Thanks Lynn and Skippy. I really need some prayers right now. I had a rough day yesterday and when I met with my Oncologist today I said to him, "if this is how it's going to be, I'm out. I'm done."

Yesterday was my first day of the chemotherapy pill (Temadol) and I took it fine, had my radiation fine, but about an hour after radiation (still on an empty stomach as per instructions) I started vomiting. And that didn't stop for 12 hrs. You can guess what happened. Without anything in your stomach you bring up bile, and when that runs out you bring up??? You guess it. Pure chemo. I'm sure I'm not the only person this has happened to, I'm not the first, I'm not the last, but every time I vomited, I cried. The pure agony of the burning coming up through my stomach and out was something I've never felt before. My lips are raw and red today and my tongue is all burned and blistered.

I know, I'm complaining. And I try not to, because I'm not the only one dealing with this hideous beast, but the day nurse believed it was because I was taking the pill and not the IV. So before shipping me to the ER (I really didn't want to go) she called a few Drs and I was told to skip todays chemo dose. THANK GOD. The agony stopped around midnight lastnight and I could finally sleep. When I awoke I learned my Oncologist would see me earlier than my scheduled appointment to discuss what happened yesterday.

He is putting me on a stronger anti nauseant to take 1 hr before the chemo pill, that is to be taken 1 hr before radiation. Then I am to take another pill 1/2 hr before I take dexamethasone which he was reluctant to give me BUT finally gave in. He said the brain swelling could be leading to some nausea. No really? lol

So I was able to eat a bowl of soup today. YAY. Cold soup mind you, but I ate something! The radiation (so far) doesn't seem to be bothering me (that I've noticed) but that damn chemo pill kicked my ass yesterday. I never expected that chemotherapy would be a walk in the park, but I feel so discouraged that my first day on the pill was so incredibly awful. I'm actually afraid to take the damn pill tomorrow night. But alas, I must pull up my panties and see what the evening brings after I take it.

[hollyquaiscer]

Oh hun, I feel so bad for you. I was shocked too when taking that little pill made me so ill. I would have never thought that could happen, but I hear you on your stomach burning. The acid that comes up actually ate my mouth skin inside and on my lips. I hope the anti nausea meds work better today. In the big scheme of things, it's just a stumbling block cause I know you're a strong woman and you WILL get through this. Your emotions I'm sure are running wild at this point with not knowing what to expect next. Hopefully tonight will go much better for you, and then each day getting better from here on end.

My body seemed to get immune to the nausea after a while, it took a while but I'm sure you will too. I'm happy you were able to eat something today. I lived on popsicles for over a week I bet. Anything that makes your lips and mouth feel better and will stay in there. Also, ice chips helped me a lot, I believe it froze my mouth so I didn't feel the rawness inside. I'm thinking of you hun and keeping you close to my heart and in my prayers. Please hold your head high and know that in your loneliest moments, through the tears that I (we) are all here for you, whether you want to cry, laugh or just read. AND, don't ever think your complaining, cause if you don't have a right to, then nobody does. We always want to stay as positive as we can through this. It seems we think that if we're strong, then everybody else around us will be too, please honey, cry away,,,your allowed.

[hollyquaiscer]

[walkonby]

Tara, that cold hard factual account of what you REALLY experienced with that pill is such a reminder for every one of us to fall on our knees and give thanks for every breathe we have. It must have been hell, I am dumbfounded like others may be who read about how you tackle every single hurdle. You seem to have the most caring experienced caregivers, I really want that next pill and the nausea prevention to work better for you tomorrow! You are the definition of strength right now.

[Lynn49]

My dear Tara, saying that I'm so sorry this is happening to you seems so insufficient. I honestly had no idea that chemo was that horrid. I knew, of course that it isn't "a walk in the park" as you say, but what you had to endure!! Holly is such a loving resource for you...hold on to her words and suggestions, and I hope you know that each and every time you go through tough times, our healing thoughts and prayers are with you, keeping you company, keeping you safe.

What time does your treatment start, Tara? I'd like to pray for you at that time....

Gentle hugs, Sweetheart, and like Holly said: if you don't have the right to complain, to feel the need to scream, cry and post all your feelings here, then no one does! I'll pray that your new medications for your nausea bring you much relief. {{{hugs}}}

[Kitty77]

Thinking of you Tara, take care!

[Lynn49]

Thinking of you today, Tara....

[TaraF]

Thank you guys for being here for me, I really appreciate it. I am trying to be as strong as I can and deal with all of this as best as I can, but it's really hard at some moments. Holly thank you for the tips on ice and popsicles, I'll load up at home on the popsicles for when I am here on weekends. Unfortunately being at the lodge I am kind of at their mercy with meals, though I did notice on of the cafes has one of those cooler things with ice cream type items. But how expensive are they? The first day we were there my husband and I sat down and ordered 2 sandwiches (just your typical cafeteria packaged tuna sandwiches) and 2 bottles of pop. $17.00! Eek! But I could always take freezies and put them in the common freezer! I'll try that!

Tonight I'm trying the new pill (Granisetron) 1 hr before my chemo pill, and I'm taking that 1 hr before bedtime to hopefully minimize the nausea. *fingers crossed*

Oh Lynn, you are a sweetheart. Most of my radiation appointments are Mon-Thurs at 10am, so I take my chemo 1 hr prior to that. My only odd days are Fri when they schedule me at 2pm and weekends my chemo pills are simply before bed which is around 10pm. By yesterday the tiredness really hit me.

[hollyquaiscer]

Tara, can you and dh pack some things from home and bring them to the lodge with you when you return? There's a fridge the right? Perhaps some yogurt, a few sandwiches, some crackers and cheese. Even if they have rules, unless you're on a restricted diet, I've found that the staff are usually pretty great. You are going through enough without loosing your life savings just to eat dinner.

I hope that your nausea stays away to give you a chance to get some sleep. Maybe if you bring some boost or ensure with you it will also help keep your strength up. Make sure it's cold, tastes like you're treating yourself to a nice chocolate shake or strawberry

I'm thinking positive thoughts and praying like heck for you hun. Please let me know ow if I can do anything or if you need anything, and I mean that

[TaraF]

Actually Holly we do have a meal plan there, it's just the first day we were too late to order from it. With the way that my chemo pills have to be taken I have to skip breakfast every morning and so my first meal of the day is going to be lunch, if I feel like eating it. I will definitely look into some glucerna (since I'm diabetic) to at least get something into me when I don't feel like eating. Good call! I really appreciate the offer, and I may end up PM'ing you for some private advice about certain things I may encounter, hope you don't mind.

[hollyquaiscer]

Please do hun, anything I can do to help you, you know that. I've told you before and I mean it. I'm a ways away, but I do have my ways


Eating is so important, with me I tried, but most stuff didn't sit right, and it's so very important to keep your strength up. The more calories I could stuff into my body, the better I found that I could handle treatments. It really sucks that you can't eat any breakfast, especially if the night before was good. I always found that was one of the only times of day that I actually felt like I WANTED something to eat. Maybe you could be tempted with say....a Swiss chalet hot chicken Sammy

[TaraF]

Thank you Holly. Right now I'm finding the things that are "sitting right" with me are premium plus crackers and Smart 16 bread lightly toasted. So far. AND I'm happy to report that I took my chemo pill last night with the new anti nauseant and *knock wood* it's stayed where it needs to stay and my tummy is feeling ok. I also slept a straight 10 hours! My cat woke me up or I probably would have slept longer lol

I don't think I mentioned how sweet the nurses at the Lodge are. There are 3 of them that take 8 hr shifts Mon-Fri. Day, Aft, Eve shifts. I'd say they are in their early 40's, not old enough to be my mothers, but they sure treat me like their daughter. It's rather sweet. When I was really sick on Thursday the afternoon nurse was running up to the second floor to check on me every 30 minutes, bringing me diet gingerale and checking my temperature. Well when she'd come in it seems every time I'd vomit (poor lady) lol so she'd sit on the bed and rub my back as I did. So motherly. She came in Friday morning to check on me with a gift in hand. She said to me "I felt so bad yesterday, every time I came in the room you got sick. I was out with my daughter and saw this and said I needed to pick it up for someone. I hope it makes you feel better." I opened it and it was a Hello Kitty charm to clip on to whatever. How amazingly sweet is that? We had a conversation the day before and I mentioned that I was obsessed with Hello Kitty and she goes out and buys me something to make me feel better. I can not sing their praises enough at the Lodge. They truly go above and beyond there to help the patients that stay there.

I know I make donations to the CCS but I think once I'm done with all of my treatments I will be putting the Lodge on my list of places to donate to as well. I've only been there a few days and they've already done so much for me and made me feel so at home there. A very important thing when dealing with cancer and being away from your family. Granted, I'm lucky enough to have my husband with me by my side at the Lodge too. That's a huge blessing.

[avoncallingu]

Tara, I'm sending all the positive "waves" I can muster. I think "vibes" may be a bit too much of a jolt! Isn't it wonderful how kind service people can be? Nurses are, for the most part, angels here on earth! Good luck each day as you face this challenge! If it takes a village to raise a child, it certainly takes a team, as big as SC and all your care-giving staff to be with you through this!

[MortgageQueen]

Wow Tara. That was one rough night, you poor thing! . . . and yes, Lynn is right. You just go right ahead and complain all you want. You deserve the support. You're a very brave girl dear, and quite an inspiration to us all.

I'd like to make a shout out to Holly for her "real life" support and suggestions. Kudos to you!

I think it's fair to say that the SCer's on this thread would like to send ( via you) our warmest thanks and gratitude to your devoted caregivers at the Lodge. Please tell them how thankful we all are that there are people as wonderful as them to care for any of us when we are weak.
If young people idolized people like that instead of rock and sports stars, imagine how much better the world would be. .. . .