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forme's picture
forme
Posts: 1158
Joined: Aug 2010

Hi All,
Well, the Dr said I should do more watch and wait. But only for a few weeks. I feel like that is all I have beed doing already. I have had so many scans and blood work etc. and I am so tired and very frustrated with the whole thing. I don't know what to do at this point. I think what they are really trying to do is to find a good node to biopsy. So far mine have not been very helpful to the Drs.
My symptoms have not changed and still occur. Fatigue is the worst. As far as stress goes, well I am stressd, but not to the point of despair. I know many of you had a long road to dx and tx. Your comments have really helped me to cope.
Also, as many of you know, I will be receiving rads for my recurrent thy ca in a few months.
Wishing you all peace and healing..
Lisha

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

Why are they waiting months to treat the thyroid again?

I feel bad for as I know how hard it is to wait. It stinks. Enjoy the moments as they come and try not to think about it.

Have a great weekend!!

forme's picture
forme
Posts: 1158
Joined: Aug 2010

Hi Beth,
I try so hard to be calm and collected. Some days are just a lot harder that others. This has been a hard week for me. The news about waiting, the news about the thy ca tx , all the various symptoms and the knee issues. It feels like a lot to me. I am sure that many of you are having a much harder time right now. But it does get to me. Today the pain is bad and that just adds to the fatigue.
The reason I am having to wait for the rads for the thy ca is complicated. I have some of the cancer cells that respond to iodine and some do not. So some of the rads will be radioactive iodine. Since I had so many ct scans with iodine contrast, the Dr said it will take 12 weeks to clear enough out of my body for the rads to hit their target. It is a type of whole body big dose rad. The other type which they plan on doing about a week after is the external beam type. But they need the first type to somewhat leave my body. Otherwise it is to toxic for me. Thats how it was explained to me..
Hope you have a wonderful weekend too...
Lisha

allmost60's picture
allmost60
Posts: 3175
Joined: Jul 2010

Hi Lisha,
I'm so sorry. A couple more weeks can feel like for-ever, I know how your feeling.It has to be extra tough with recurance plus the new diagnosis,I can't even imagine. I'm day 3 after first chemo and all I can say is UGH! Slept again last night,(5 1/2 hrs) so that was good, but my body is really slowed down today and I'm weak. Weird day to say the least, just hope I sleep again tonight. Sleep seems to be coming a little later each night...good old prednisone. Take care Lisha and I'll keep good thoughts for you.
Love...Sue

forme's picture
forme
Posts: 1158
Joined: Aug 2010

Hi Sue,
Thanks so much for the kind words. I have been thinking of you too. I hope that things start to improve for us both. I'm glad that you were able to sleep. I have had such a hard time in the evening, then sleeping till mid morning. Feels very off. Do your best to get rest, even if it is just sitting in your comfy chair, chillin.. Aside from feeling slowed down, how is it going. Any nausea or lack of an appetite. Lately for me, yogurt is my staple. I just wish I had less fatigue and pain. But, it is what it is for now. And I know that it to shall pass...
Have a peaceful and restful weekend..
Lisha

vinny59's picture
vinny59
Posts: 1030
Joined: Nov 2006

Sucks to hear what you are going through, just take it easy, I know it's easier said then done......... I've been having a rough couple of day's, but you know we can do it!!!!! Have a nice weekend.. Vinny

forme's picture
forme
Posts: 1158
Joined: Aug 2010

Hi Vinny,
So sorry your having a rough time of it. I sure do wish it was easier for you. Seems like you have to really put up with a lot lately. I have had severe anemia many times. I think that I must have received more than 40 units of blood to deal with it. Now my norm is always the very lowest side of normal. So, I do understand about the breathing and lightheadedness etc. that goes with anemia. Be careful if your on any stairs. I hope that your counts pick up soon. It's so tireing.
Have the best weekend you can. Stay rested and peaceful..
Thinking of you..
Lisha

truckingalong
Posts: 444
Joined: Aug 2010

Lisha, I know how that is when you re having pains and that feels forever. Doesn't your medications help you much? Wonder what kind? I too went through painful sore throat, ears and gums. Really unbearable and took Vicodin - helped some but then now they are gone so yes, your bad days do pass by. Next Tues is my chemo and so when I get the pain I will be thinking of you and remind myself this shall pass!!! Speaking of yogurt, I am addicted to yogurt smoothie and ordered my favorite, Pineapple Surf at Smoothie King a lot. Now I have to make that at home so to save moola!

Have a good weekend
Liz

forme's picture
forme
Posts: 1158
Joined: Aug 2010

Hi Liz,
Really, I have never had a smoothie. Had lots of milkshakes,vanilla is my favorite. I do take pain meds ,ms contin and liquid morphine and it helps, but to be pain free I would need to take a lot more with the zofran. That makes me feel so loopy and even more tired. It's a balancing act. Don't want to feel so out of it and want the pain to be minor. I can't take vicodin so I'm stuck with the morphine. What I really need to do is to stay off the stairs as much as possible. It's hard to do..
What part of the country do you live in. I have never heard of Smoothie King..
Have a peaceful and healing weekend. I'll be thinking of you on Tuesday..
Lisha

onlytoday's picture
onlytoday
Posts: 596
Joined: Jun 2010

Just wanted to share my smoothie recipe: non fat plain yogurt, blueberries, banana, whey protein powder(one capful from the container, I like plain but it comes in flavors), ice, (honey if you need a sweetner) Blend and enjoy! (strawberries are good in it too -- you can add any fruit you enjoy) I think I'm addicted to them at this point!

For those who haven't tried it maybe it will help. It's easy and we make a blender full and keep it in the fridge and take it out and blend it for a few seconds and I enjoy it all day. It's a good way to get protein when you really don't feel much like eating.

I wish you all the best. We can do this, together!!

KC13167's picture
KC13167
Posts: 215
Joined: Jun 2010

You brain washed me! That smoothie sounded soooooo good that I went out and bought a single serve smoothie maker and all the fixings! Delish, thank you for sharing! Kellie

truckingalong
Posts: 444
Joined: Aug 2010

I am in Maryland so there is a chain of Smoothie King around. They have great add ons with protein, anti-oxidants, immune booster, muscle/joint booster, on and on. It is great. I used not to be crazy about yogurt but now I love it with all these juices (including the greens) stuff with the fresh fruits put in, it tastes real good. My fav is Pineapple Surf.

Sorry to hear about the meds being heavy on your body. Yeah, take it in a balancing act. Hopefully the smoothies would help rejuvenate your system...

Good luck healing and wishing me well for Tuesday (it is my birthday too!),
Liz

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

I lived in Maryland most of my life. A place called Catonsville and Arbutus. What part are you from? John

truckingalong
Posts: 444
Joined: Aug 2010

I am in Gaithersburg - northwest part of MD in the DC metro area. Looking forward to cooler weather now!
Liz

allmost60's picture
allmost60
Posts: 3175
Joined: Jul 2010

Hi Lisha,
I haven't gotten sick yet,(take zofran a.m. and p.m.) but I do get a bile like taste off and on after certain foods...eggs..butter,anything the least bit greasy..yuk! Now I'm not eating any fried or greasy Bad face flushing, red cheeks...skin feels dried like a prune. My appetite is shot but I'm force eating all the things my nutrtionist has set up for me. I still taste food, just no desire. Head feels stuffed up and ears ring off and on. Actually Lisha, I'm just going hour by hour because weird stuff just happens out of nowhere. I'm thinkin it's the prednisone because it has "always" messed with me. I'm sure the R-cv is doin it's thing also. It's a ride..oh boy!
Love...Sue

forme's picture
forme
Posts: 1158
Joined: Aug 2010

Hi Sue,
Yogurt and applesauce works well for me. easy on the tummy.
Pred is the Devil in disguise. No kidding, it really sucks. I feel for you big time.
I think taking it hour by hour is a good plan for now. Once you get the hang of things , maybe you can take it day by day..
Right now, I am trying not to take the zofran, so I am taking less pain meds. I do okay but have medium amount of pain. Oh the joys of cancer and being middle aged...( I am not old !!)
Stay well my friend..
Lisha

forme's picture
forme
Posts: 1158
Joined: Aug 2010

Hi Sue,
Had another thought for food. What about rice krispies with or with out some fruit. Berries or a banana. Thats what I had tonight, it's another of my favorite tummy foods. Sometimes vanilla or strawberry ice cream or milkshake, but not if my tummy feels really bad, it's to rich. Oh, another idea is french toast. It's easy on the tummy and easy to swallow. When I had the rads last time for the thy ca, I lost most of my taste buds. Didn't come back for over a year and never fully. I had a lot of issues with swallowing too. Lost most of my saliva due to the rads damaging the salivary glands. Always have to have water with me. Its getting better now but most likely I'll be right back to that place again. Sigh...
Cream of Wheat is good, oatmeal is a little tricky sometimes. If I think of some other ideas I'll pass them on. Oh, pudding, almost forgot the yummy cooked pudding.
BTW these are easy things for your hubby to make you if your not feeling up to it.
Thinking of you...
Lisha

truckingalong
Posts: 444
Joined: Aug 2010

Good idea, Lisha about the rice krispies - I would imagine it is gentle on the throat with milk or almond milk that I like. My sister and niece just made me lots of matzah ball soup and I have them frozen so will eat them as needed. Hope it will taste good when my throat gets yucky! Sue, hope your eating experience improves!

Next Wed., my family is supposed to go to relative's house for 25 people gathering for Rosh Hashana dinner. That is the day after I will have chemo. I am wondering if I should go because what if effects hit me and then ugh... do you go join crowds or planned events after you had the chemo? I guess I will play it by the ear but it s sure no fun wondering not knowing what will happen when I meet people plus dealing with people's immune systems as well. Sigh...

Thinking of you all in prayers,
Liz

vinny59's picture
vinny59
Posts: 1030
Joined: Nov 2006

Hey Liz, bring hand sanitizer, make sure that no one has a cold, and don't kiss anyone! LOL
You will know how you feel........ Vinny

truckingalong
Posts: 444
Joined: Aug 2010

Yeah, if suddenly the effects hit me I just would go upstairs to the bedroom to avoid the people but I hope not. Good idea to keep "hands off" from others... just learned that 2nd treatment that I will have next Tues may not be that bad. Ok, I ll take it just into strides.
I am gonna paint my new office to keep me from thinking about Tuesday!!
Thanks,
Liz

yesyes2
Posts: 462
Joined: Jul 2009

Hey Liz,
I find you just amazing. Can't believe your up to painting. You go girl!!!
You'll be fine for the family gathering, if tired just sit back and relax, let every one else do the work. When I was going through RCHOP last winter I skipped all family gatherings, just too tired and over stimulated by being around a group of people to handle it. Also very concerned with catching something especially because of the H1N1 and having young grandkids. Stayed home for Thanksgiving and Christmas, which was just fine with my husband and me.
Have a good weekend painting and sending good wishes for an easy chemo on Tuesday.
Leslie

forme's picture
forme
Posts: 1158
Joined: Aug 2010

Hi Liz,
Another easy on the tummy/throat food that works well is noodle kugel. The sweet custard type. It's also very healthy when you need to keep up the calories. Good old fashioned comfort foods... Yumm
I mentioned french toast, be sure to make it with challah bread. It's the best !!
Have a peaceful and healing weekend.
Lisha

yesyes2
Posts: 462
Joined: Jul 2009

Hi Lisha, I have been hungry for some really good noodle kugel for ages. Do you have a recipe? Yummy yummy! And I've never thought of making French toast with challah bread. But that's really hard to find where I live.

I'm actually feeling guilty about our being on an Alaskan cruise vacation during the high holidays. Never checked dates when we made reservations. Especially after having had four cancers, 3 of which were in the last 2 years I get a little uneasy rocking the boat.

I think you are in the bay area, where do you live? I am down in Santa Cruz but lived in San Francisco for 12 years and really miss the city.
Take care and have a good weekend.
Leslie

forme's picture
forme
Posts: 1158
Joined: Aug 2010

Hi Leslie,
I do have a noodle kugel receipe, I just have to find it, It is my mothers. When I do find it, I'll post it for you.
True Challah can be found at Whole Foods. There is one in Santa Cruz and one in Capitola. They always have it for Friday, if they are out of it, you can use their Brioche bread, but the true challah is the way to go for french toast. That's the way I have it since I was a little girl growing up in San Francisco.
Don't feel guilty about your trip. Just enjoy the heck out of it. You will have to fill us in on the adventure. I have always wanted to go on an Alaskan cruise.
I live near Stanford.
Have a great weekend and trip..
Lisha

truckingalong
Posts: 444
Joined: Aug 2010

Leslie and Lisha,

Yes - I forgot about the noodle kugel. Good idea!! It is so easy to make. It has variations - with apples, raisins and cinnamon or sauteed onions, or it can be mixed with veggies. I have one that is all-purpose and adjustable to your preferences. Will post it shortly.

Liz

yesyes2
Posts: 462
Joined: Jul 2009

Hi Lisha and Liz,

Have you noticed we're all names with an "L". Hmmm!!! My mom used to make a really mean, good, kugel to serve as a side dish. When she died I never found her cookbook, all hand written with items passed down to her from her mother. It's really sad all those recipes were lost. But mostly it's sad that a very well love book and memento of my mom is gone. I was only 24 when she died and not really into Jewish cooking, if I had only known.

Lisha, never thought of Whole Foods as making authentic. I'll have to try them out.

Thanks,
Leslie

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