harmony
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Kris,
I wish I had words of wisdom for you now. You’ve done this long enough that you are able to make your own best decision, and I know you’ll do it again this time. Sending you strength, peace and continued prayers for healing….
Harmony
Hi vwallis:
As a mother to a young child and was diagnosed last year with CC, let me say I understand your sister’s will to fight. I’m sorry that she’s faced with this disease and has heard such frightening news from her oncologist. Feel free to visit as often as you need to so that you can obtain support and vent your frustration. Your sister is so blessed that you care so very much for her and her children.
I’m so sorry for your loss. Take comfort in the fact that your husband is no longer suffering from this disease and that he surely passed knowing just how much he was loved. I’ll say a prayer for both him and your family to help you through this difficult time.
Oh, Kris. Hugs to you girl. We’re all cheering you on, hoping that things get better for you. Prayers and wishes for healing on the way to your room.
Hi Kris:
Praying for a positive outcome for the new surgery – sounds like you haven’t exhausted that bag of tricks just yet! Healing thoughts to you and your family…..
Valjee wrote:Hi Harmony!Great stuff & thanks for the hug, it even reached across the pond to the UK! Marvellous.
I’ve been reading your blog – I think I’d like to come and live near you for a short while – your food sounds really good! I’d be a very happy recipient of your ‘feed friends’ strategy.
I may have questions soon on translations of what certain foods – have you heard the saying that England (& the rest of the UK) & the U.S. are countries separated by a common language? Yes indeed! White beans?Keep going as you are & watch out for runaway garbage trucks!
Take care, Val x
Hi Val! I’m part Cajun, part German, and I sometimes pull from my Cajun comfort foods when I feed my family. I make gumbo, etoufee, and white beans and rice (at least those are the savory dishes I make). My Maw Maw (grandmother) used to make homemade pralines and divinity (yummy candy), and I’m working on those recipes since she passed on 2 years ago. So hard to perfect recipes she spent her life making over and over again.
White beans (at least on this side of the pond) are another word for navy beans, little bitty white beans which are stewed down with onion, garlic, red pepper flakes, fresh thyme and usually some sort of pork product – my fave is smoked ham hocks. We serve it over rice with cayenne pepper sauce. Yum. Visitors always welcome – I love to cook!!!
Oh hon, I had the same type of thing, but still don’t know which of my meds caused it, because they were all eliminated around the same time. I had some weird and creepy dreams, like my cat turned into a demon and tried to attack me in my sleep. This all happened together with the “jerks” that we spoke of previously, so it was really hard to get restful, peaceful sleep.
I’m not a doctor, and I don’t play one on TV, but has hospice mentioned combining an anti-anxiety med with the morphine to cut back on that stuff? I hate that Teddy isn’t having good sleep when he really needs it.
Kris,
I’m so sorry things are so tough for you. What do you need right now? Words of fight and motivation, words of comfort, a soft place to lay and just let it all out? You’ve been so strong throughout all this, and I know that even the toughest of us can sometimes feel scared when our bodies just don’t do what we want, so let us help you.
Prayers for your healing are headed out, as well as ones for strength and comfort.
Lainy:
Hugs, girl. You are such an amazing woman. I will bet you a million bucks that your calm, loving and reassuring personality rubs off onto Teddy and is certainly helping him through this time. Take care of yourself as well. I know it’s got to be hard when you feel like the caretaker 24 hours a day, but you’ll need to vent, to decompress when you feel stressed. Lean on us….
Actually, I think I’m a bit mental. Any person in their right mind would probably say, “you know, my body is telling me I need a break.” I’m sure it does, but when I take a week off or get a reduced dosage, my CA19-9 goes up, and that freaks me out. So, my doc gives me chemo instead of telling me to take a Xanax and relax.
Frankly, at this point I think I’m more in danger of a broken bone or something – Harmony starts yoga this week! I’m hoping it’ll give me some muscle tone back and help with my terrible balance lately. I’ll update yall on how well that is going when I go to the hospital to get my arm casted or some other nonsense.
As my kid would say (as he’s running around the house in underoos and a Buzz Lightyear costume), “to infinity….and beyond!”
Hmmm. You know, I had a chemo-embo around Memorial day, and following the surgery, I had a number of meds, including oxycodone, Reglan and tramadol. The Reglan made me jerk a lot in my sleep, kind of like when you in that in-between sleep and you feel like you’re falling. It also gave me really really freaky dreams and hallucinations. It sucked. I bet it’s the pain meds that Teddy is on. Does he ever know that he’s doing it, or is it just something you notice and he sleeps right through it?
How sad. My sincerest condolences to you and prayers that Kristen is both at peace and looking down on you now from a place where this disease will no longer affect her. She was a brave woman, and I admire her strength throught her battle.
Hi:
You’re not alone. I have a young son, and I too, do not want him to go through that kind of pain. I was diagnosed with stage IV over a year ago. My first line chemo worked, then stopped. So, I decided to try, try again. Guess what – I’m still here. So are you . That’s such a personal decision, and it’s one you should make with as much information as you can get your hands on. Just remember, information doesn’t take into account each individual person. Your miles may vary, and you might respond beautifully to one chemo while it might work miserably for me. You can try and then stop whenever you want, or decide no chemo, and then change your mind and give it a shot. Just don’t do it alone. No matter what you decide, give yourself an outlet. Sometimes just talking about it will help you decide what you want to do.
I agree wholeheartedly with everyone that recommends second, third, tenth opinions. Go with an oncologist that’s had some experience with this cancer. Go with an oncologist that mirrors your desires. I choose to be aggressive. My oncologist is down with that, and is as aggressive as I am. We know that sometimes treatment hurts me, but it’s my decision to keep going, and I am grateful that he won’t hold back.
The people here are so stinking supportive. They’re like extended family caregivers, and they’re so selfless with their time. If you need support, it’s hard to find a better place. Utilize the wealth of resources that you have available.
I’ll say a prayer for you tonight – I’ve been where you are.
Hi Rowena:
I was diagnosed in September 09, and the Gemsar/Cisplatin combo has been the first chemo that we’ve tried. The effort is geared towards clearing out the lymph nodes in prep for surgery. While it’s certainly an unusual response, my oncologist said it has happened before, so I’m just gonna go with it.
I have my tumor markers run at the beginning of each cycle, but in my case, the numbers don’t mean much. When I was diagnosed, I had a 7.5 cm tumor in my liver and regional lymph node involvement. My CA 19-9 was 60. It went up to 90 after my first cycle and then downhill to 42 at the beginning of February. I took a 3 week break from chemo and my markers went up a bit during that time, and rose a bit more after my first cycle back on chemo, just like it did right when I started chemo in the fall. My oncologist and nurse feel this is just a small wave similar to what happened in the beginning, so we’re going with the belief that the chemo is still working.
I’m gonna go out and say that CC is such a turd – everyone is different. It’s nutty to think about my CA 19-9 markers being indicative of anything in my body considering I was diagnosed with a big ol tumor and stage III CC and those markers were a whopping 60. Cancer, she’s a sly one; she likes to keep you on your toes and everyone gets treated a bit differently. I refuse to be on anything but high alert until I know for sure this crap is over with….and then who knows, she likes to come back, so I’ll have to still watch out for her in the future.
I believe that what may work for me may not work for you, but that you may find some combo that wouldn’t have worked at all for me and blows this monster out of the water. Radiation isn’t a huge thing for me because we’re trying to nuke my lymph nodes as a priority, but it works for some people. I hope you find quickly what works for you and the fighting spirit kicks in.
