mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

[Sharona]

Gwen, I love the idea of the shirt with NDY! I have a friend who , when asked how he is doing, responds with "I'm still breathing."
And Pollo I am in agreement. I usually don't wear my Relay for Life shirt in public for that very reason.

When I was dx a rather large kidney stone was found. It has probably been floating around in there for years and had never given me any problem. About three weeks ago, it decided it was not happy where it was, but is too big to pass on its own. Since I also had a kidney infection, the urologist wanted to clear that up first before doing anything. A few rough hours, but it has been pretty good since then. That was until this morning...

I had an MRI scheduled, followed by an appointment with the neurosurgeon (about an hour away) then returning back home for an appointment with the oncologist. I took a pain pill at the first twinge, but the vomiting started just outside of Birmingham. They did a great job of quickly getting me out of the tube when I pushed the panic button during the MRI and gave me a wheelchair rude to the neuro office. Unfortunately, the report there was not good. There is a new met on the frontal lobe and the neuro wants to do more CyberKnife. The good news is that it is small and he does not expect it to give me problems for a while.

Still sick on the ride home whee I was able to get a short nap before the onc appointment. She gave the okay to zap the stone, reduced my Stivarga dosage - YEA - and I see her in a week. From there I went downstairs to the urologists office and scheduled to have the stone zapped tomorrow morning and a stent put in I will be so glad to say goodbye to that thing! Please say a prayer it all goes smoothly.

Hugs to all,
Sharon

[Icesk8tr]

Sharon,
Good luck tomorrow. I hope all goes well getting your kidney stone zapped and stent put in. I will say a prayer for you

Hugs,
Christine

[jeanette57]

Gwen and Pollo

I am not sure there but here it is 25 bucks a TEE with your sayings. I have BALD ON THE OUTSIDE, BEAUTIFUL ON THE INSIDE. I never thought of the V neck but the next I will. I may steal that NDY then add too young yet!

Gwen - there is to much fried fat in those donuts. Sorry, we should eat what we like but fat kills me along with milk. They told me that Xelotia would hurt me on an empty tummy. I do one pack of instant oatmeal with brown sugar and maple syrup on it. All my blood relatives are diabetics so when word got around that NOTHING helped my sugar crashing - wow they dragged my tired sorry butt to the store and got lots of fruit drinks, 4 cans of cake frosting - jello which I am to drink hot (hum) and called my sugar doctor. I will have to tell her I am off insulin now. I am taking nothing as I converted to low blood sugars. YUCK to all their eat this! Oh they take me because I toss out anything made in china - and I read USP labels to know where the product was made.

today I had to get up at 5 am to eat as I was starting to crash again. But it give me a chance to get ready for my next apt with local agency that will help me figure out next step for insurance. At 60 now they want or demand I go on Medicare with some thing like part A, B, D or such. Way beyond me for this type of decision so local senior group will help me.

Also - sad day - my baby (Betsy) is going up for sale. My truck! They came and detailed it, then they are going to sale it for under 3000- She has less than 100 thousand and boy that Toyota has never failed me! I will miss her

[skypup]

Jeanette, Medicare has been great for me! The hardest thing was deciding on a supplemental plan. They all have the same coverages (for a given plan type), so price shop like a shopping junkie!

[Guinevere]

Sharona,
I'm holding you in my prayers and I'm glad you're going to be able to get the stone zapped and that Cyberknife is a viable treatment for the frontal lobe met.

I changed up my breakfast this morning to half a lemon muffin and one cup of coffee and then I waited almost two hours and had a small bowl of Cheerios. I was hesitant to eat the cereal because oats in the morning usually sours on my stomach but this didn't! Yea! I got queasy about a half hour later, ate two small pigs in a blanket (Sister Schuster! YUM!) and my stomach settled right down. So, now I'm wondering if I can "stomach" protein first thing in the morning. I know the smell of eggs in the morning makes my stomach turn but there are other alternatives out there and I'll try them. I just about got burnt out on yogurt. That's a shame because that would be a good source of morning protein.

One sister is coming up tonight and the other will join us tomorrow. I'm hoping I feel up to going to get Chinese food since DH is going to go suit shopping since the sisters can be there for me if I need something. Keep your fingers crossed!! I've really been craving Chinese food for about two weeks or so but DH doesn't like it so that's out when we're together which is most of the time.

Julie, I like the NDY standing for Never Die Young and I also like the "Part of my new reality is living with a terminal illness" for those days when I just don't feel like "bucking up" and, yeah, I have plenty of those days.

Jeanette, Shypup is right about the Medicare and the supplement. There are so many companies and they don't all cover the same thing. I'm glad you're getting help from the senior citizen's center. DH's head was reeling from trying to pick out a Part D (prescription) supplement!

Hope everyone has a decent weekend!

God bless ~
Gwen

[Sharona]

Christine and Gwen,
Thanks for the prayers! The dr was able to crush the stone into very small pieces and insert a stent.
Now to drink, drink, drink and get the remains of that little $&@ out of there!

Jeanette,
A belated happy birthday! I'm glad you were able to enjoy it. I Spent several days researching and comparing supplemental plans and was even more confused on which to choose. I even toyed with the idea of not getting one because I was very heathy and fit at 65, and had not seen a dr in years! Little did I know that three months later things would change when I was diagnosed. A friend who happened to handle insurance claims in a medical clinic advised me to go with AARP or BC/BS. She explained that many of the others are not accepted by all doctors. I went with Blue Cross of Alabama and have been extremely pleased that they are accepted everywhere and coverage is fantastic. Good luck!

Have a good weekend,
Sharon

[jeanette57]

Alien Alert

Due to cancer and treatment - there is someone else in my body. Who the heck could Imagine that! Hum - went to another party and turned down all the goodies. I had them go get me a sandwich. No ice cream. no cakes, no to the fresh home made pancake (one had a tooth removed so soft fluffy pancakes). Yuck, I snuck into ice box and took a plum, peeled it and that darn alien --- was in heaven - ,making odd noises. I would steal or lame for a peach (but none in ice box), family and friends giving me odd looks.

I have to go to cancer center and find out which insurance they take. they don't take aarp hmo? I have 9 choices and that is crazy. I don't know about the chemo and will check Monday. It took 3 hours to apply for assistance on the "AS NEEDED" drugs. ie, ondansetron etc. too much leg work and crazy let the alien in - my brain is mush.

I tried to have Chinese-- Gwen--- but once I saw the salad - paid 15 bucks for the buffet and all I ate was one small salad. Good thing I paid for mom because in our old family not eating the whole thing was a big sin (no wasted food in our house). We had a blast and I enjoyed hours of talking. Today had the sandwich but I will have to eat tonight - I am so tired of protein! I know I need it but beans (gas), steak (teeth hurt), chicken (I cluck) next will try lamb - I hope that is good but if grease - hum????

hope all of you are well and NDY and love and light to you all. Good night - alien going to bed

[Icesk8tr]

Jeanette,
HAPPY Belated BIRTHDAY!!!
Hope you had fun!

Christine

[Frenchie's Wife]

I have a Pet scan next week. I don't get the results until July 7th. I am not anxious but I am a little curious. My lung mets double in size every 3 months. Some of my summer plans are in limbo until I know if we are talking weeks or months left here. My wife needs to know so she can schedule her vacation time. Dying is very inconvenient right now, I have a few things left on my bucket list.
frenchie

[Guinevere]

I have a Pet scan next week. I don't get the results until July 7th. I am not anxious but I am a little curious. My lung mets double in size every 3 months. Some of my summer plans are in limbo until I know if we are talking weeks or months left here. My wife needs to know so she can schedule her vacation time. Dying is very inconvenient right now, I have a few things left on my bucket list.
frenchie

Yeah, that ol' death is always inconvenient, isn't it, frenchie? I would hate to have to wait that long for results! I'm praying you get a decent report.

My siblings are all coming up here last night and today and we're going to Paris for Chinese food and to see the Princess and her parental units so I'm having a good weekend so far. The nausea wasn't bad this morning because I immediately ate something with some protein in it or at least that's why I think it wasn't as bad.

God bless ~
Gwen

[jeanette57]

Wish I could set a date and time to die - but still have to wait this journey is over when the fat lady sings and I am not fat anymore - you all have to wait a long time

I ordered a pizza, how funny because I figured how many meals I could eat off it. I was going to order walnut shrimp from local but you can't freeze cooked shrimp. darn! It is rich a sauce - but not going to happen today.

reading and lazy day, asked family to leave me alone to chill down - It is hot outside but mygosh it is 79 temp and I am freezing in this new air conditioning. OPMG I am getting outside to warm up. crazy life.

have a good one. oh gwen - extra baby kiss for me. I love the way they smell and laugh and smile - yes give her an extra for me.

[Frenchie's Wife]

My original oncologist was a very caring and dedicated man. He had given me a timeline of 6.to 9 months at the beginning sinse I have an aggressive cancer. As time went by and I diden't die, we slowly became close friends we had some very interesting and private conversations about our lives. He was 54and at the pinical of his career when he himself developed cancer last year and passed away 3 months ago. I went to his funeral, how ironic. I don't think one year is long enough to be able to come to terms with dying. It took me a couple of years to come to terms with the fact that I would not grow old. It has become almost like a game to me. Every time I see my new doc, I know he is going to throw another challenge at me. I am playing with house money right now and I still feel up to another challenge or two, bring it on Cancer -- give me your best shot !!

[skypup]

These are hard days. We are losing so many loved ones.

[Bev G]

These are hard days. We are losing so many loved ones.

Yes. I was just wondering in the shower (my best thinking spot ) how I could just resign from cancer...like two weeks notice or whatever. I am SO over it. I know how fortunate I am, being in a long remission, but my body is so wrecked from the aftermath. I hurt nearly everywhere, nearly all the time. I don't want to be whiny, especially on the board (I do a lot of whining in my head) but I am so sick of all the chemo effects that just won't go away, ever, at all.

May God bless all of you dear friends. As if it wasn't hard enough just living with this stuff, but the grief on top of it makes it incalculably harder.

Love to all,

Bev

[pollo65]

Bev,resign from cancer, what a great thought. I have been looking into retirement and maybe that is another solution"retire from cancer." I had a long talk with my onc and he did say that chemo ages us probably 10 years, maybe that is why my teeth are cracking, my joints are creaking and my bones are aching (and I have been on chemo "vacation for 5 months>) My onc basically people with stage 4 and over 5 years are pretty darn new to this mix and there really isn't much known about long term surviving. It seems that arthritis, dental problems and perhaps even bone thinning are part of this long-term package. Happy to be alive but feeling like I am beginning to fall apart.
pollo 65