kris00j
Forum Replies Created
-
Posts
-
Sherry: you must have done something wrong. I own my own car and motorcycle, not to mention my mortgage. And I was approved first time. Check with a lawyer. Many of them will do the work for a fraction of your first check, which in my case wasn’t even worth them bothering. So she ended up doing all that work for free. But you have to give them a blow by blow of your worst day. Not the day that you were feeling well enough to go to the store by yourself and walk from the parking lot, etc. But the day where you were so tired after chemo or something that you couldn’t even make it down the stairs to your laundry without stopping for breath, etc…..
My platelets usually are up after a couple of weeks, also, although they’ve never gotten “far” into the normal range. They stopped my chemo in Nov 2011 because of infections. Jan. scan showed tumor still shrinking so no chemo. March scan showed new growth so they put me back on chemo.
I don’t know what your doctors are thinking but they should explain their train of thought to you.
My docs are in NYC. At Sloan Kettering. Dr. Fong is my surgeon and I like and trust him. Dr. Kemeny, my onc, will never win any awards for her sparkling personality. But she’s darned good at her job or she wouldn’t be rated one of the best. There’s another patient, Jim, who went to Dr. Kato at NY Presbyterian for his resection. Dr. Kato goes where no other doctor dares to go. Maybe you can send him your discs?
Still others go to MD Anderson in Texas. Tiffany is one of them. I’m sure some will chime in.
I also was not resectable. The tumor shrank enough for my surgeon to schedule the resection, but due to infections, I missed the window. Now I wait again. My hope is for the scan on the 23rd to show I’m resectable again.I’d love it Lainy!!
I’ve been alone many times. Once for 3 years in my 20s. By choice. And then for a while after my ex husband and I split. That was only about 8 months or so, but it was a couple of years ago. Then I met the boy. Then I was diagnosed. At this point in my life I don’t WANT to be alone. But I will no longer settle. I did that, and hated myself for it.
Maybe I need to be a greeter at Walmart?? haha Oh, wait, did I say I wanted a self-sufficient man??? Maybe not! I’ve hinted around with a couple of my friends. But no takers so far. They know about the cancer, so who would want to introduce me to a family member or friend so they can get upset about the “secret”?
Hey, at least my pillow is comfortable.Yeah. I wouldn’t give him important information until we met. His pic was cute tho. Wonder who that was???
And he couldn’t get money to pay the hospital when his poor daughter broke her tibia. Bad break. In a huge contraption. So I must feel sorry for him… Can’t get money until Monday. Can I help?? I hadn’t told him I have cancer. I guess I should have countered with “well, no, my cancer treatments have left me destitute!”
What was so funny was that he said he was going away and as soon as he told me he was in Africa installing computers, I almost wrote, “well, I guess you’ll be asking me for money soon, then”. I did say since he was in Africa I wanted to make sure he wasn’t a scammer. But he kept coming… Poor women. Some probably believe the “poor guy”.Well that was fun. NOT! Short lived. I don’t need to worry about scammers on top of everything else!! UGH! Guy’s “daughter” just got really hurt while she was with him for a job in Africa. He just needed enough money to get her out of the hospital. I guess I’m glad I didn’t give him my last name or phone number!! He wanted the phone # but I said we’d talk after he got back from his trip. Guess not….
I’ll feel bad if it’s thr truth, but I was joking with a friend that pretty soon he’d be asking me for money. Hhmmmmm…..
More venting needed!!!Jello? Applesauce?? Eggs? Chicken or pork? But no sides, huh?
I don’t remember them telling me this before my colonoscopy. I had to go on easy foods Saturday and then clears but that’s ridiculous! 3 days of “easy” foods??? And THEN 1 day of liquids??
Oh, wait, I got it!! Eat a whole bag of sugar!!!!! That’s not mentioned!!
I would call them and ask what they recommend for a lactose free mostly vegetarian.Yay! I’ve been waiting to hear! I’m so happy for Lauren. And you, too Pam. You know she is in my prayers every night but I’ll be praying the theraspheres work this week…. please, please????
Huggs!Thanks, Ken, for sharing your story. It give us all hope that we, too, can beat this horrible disease. Wishing you well with your chemo for prostate! May it be as successful as the chemo for cc was.
Go to your primary and tell them that your mom was diagnsed with cc. Although I’ve never heard it’s hereditary, tell your dr. that’s what you were told. Explain the pains and say you want at lest an ultrasound if not a CT scan of the area. With cancer in the family you should be covered under insurance, too. Hopefully, anyway.
Thanks for the link Gavin. I’m surprised, tho, that they are saying the river fluke involvement is a fairly recent discovery. I’ve known this since I was diagnosed last year. I didn’t know, however, that it was so closely related to Pancreatic Cancer. I thought it was closely related to Colon Cancer.
Jenny:
Sorry your family members don’t “get it”. But I’m glad you got to go on vacation as a family! I was going to try to visit my parents before my resection, but of course my body had other plans. Instead I’ve had a scare that didn’t turn into anything. But I had to be here for tests. Now I think, with my drs’ approval of course, I might fly down to AL with them a few weeks after my resection and do my convalescing in their home. It’s much bigger than mine!!!
Anyway, to get back to the topic:
I know my Mom is in denial. Don’t get me wrong: she was a rock last year. I am so happy to have her and my dad and that they are still able to come up here to help me. But we were talking about finances and I said I was going to cash in my IRA to pay bills. She said I’ll need that when I get to retirement age. I tried to tell her this is possibly my retirement age! And, no, I’m not giving up. But I’m trying to be realistic.
If I am one of the lucky few to actually beat this thing for more than 10 years, I’m going to have a problem but I know the chances of living more than 10 years without a recurrence is slim. Of course, we never know, do we? There is more and more research being done every day. So I try not to dwell on that aspect. But it’s there.
Every time I try to explain it to Mom she cuts me off and changes the subject. I never had kids, but I do know that no mother wants to think about outliving her child. But it’s a possibility and I want her to be prepared. I think she has an idea of how serious it is, but refuses to discuss the possibilities. She barely listened when I told her if there were complications from my first surgery and I didn’t make it I wanted to be cremated and have my ashes scattered somewhere pretty with waterfalls, flowers, or something. No morbid urn. No grave. I have no kids so why??
I won’t even try to broach the subject to my dad. I don’t think he could have that conversation. So I tell him I’m doing good and hanging in there. I think he knows how serious it is. But we’ve never discussed it. We don’t have that kind of relationship.
The only person that had a clue as to how scared and lost I get is my ex boyfriend. Now it’s just me, God and my pillow that know.Here’s the line I love. But you have to picture it. Ready??
You run into a friend who knows what’s going on, but hasn’t seen you in a few weeks. They walk up to you and cock the head to the side and say “How ARE you? You look so good!” I have been told I look good more this year than the previous 47 years all put together!
I know it’s genuine concern, but some days I just want to write a note with what’s going on and pass it out. Otherwise I’m saying “hanging in there”, “feeling pretty good” and giving some updates over and over and over.I wish I could help you more. All I can tell you is my experience. I’ve had a few blood infections, etc. this past 13 months. The signs are nausea, fever, and overall flulike symptoms. They treat with antibiotics, tho. Drink plenty of fluids. I was on i.v. antibiotics with the last infection, which they “couldn’t determine” where it was. They do help but with a lot of these infections you are just worn down and it takes a while.
Sorry I can’t be more help.Ike: I get that all the time, too. I have lost about 50 lbs. Most times I just say thanks. If I want to get into it, I will. But if I haven’t seen the person or don’t know them very well, I just say thank you for noticing the weight loss kind of thing. I’ve also gotten my hair cut short, and most people say I look really good.
I probably look the healthiest I’ve looked in almost 10 years, believe it or not. Unless you see the scars.
If it’s someone I know well enough that I want to possibly share my story with, I start by saying “thanks, but it wasn’t intentional.” If they pick up on that, I usually give them the short version. If they want more info, I lengthen the version. I do get a lot of “so is that a wig?”. NOPE. My hair. All of it. Not all chemo makes you bald. Not all chemo makes you throw up like on TV. But stay away from my feet because if you touch them I’ll deck you! The pain in my feet is bad at times. But that doesn’t show.
I’m happy for you that you are doing so well, and you had surgery. Hopefully next month I’ll be recuperating from mine!!!!Julia: My troll is a virtual exercise. Someone told me to envision Pacman running around eating the tumor. I tried that, but Pacman didn’t work. It kept stopping. Suddenly this rocky looking hand reached out from the side of my “vision” and used an axe-like hammer to knock off a chunk of my picture of the tumor. The hand picked up the piece of tumor and brought it to this happy smiling rocky troll face. Someone asked me what color he is and I don’t see him in color, just kind of a line drawing. But he happily chopped off pieces of the tumor for months. And the tumor shrunk at an amazing rate (for me, anyway).
The onc stopped chemo in Nov. because of my hospital stay. I ended up having a touch of pneumonia and a sack of bile in the left lobe of my liver. I gave the troll a straw and he happily sipped.
The troll kept eating every few nights. And sipping. A few weeks later we did another scan and the bile sack was unbelievably small!
Feb. came and went. He kept eating every few days. And sipping once in a while. I started to get nervous about the chemo not working anymore since it had been so long since I had it. Then my surgeon said we could schedule the surgery. In March the troll crossed his arms and refused to eat. At the end of March my surgery was canceled because of a lung problem and I found out the tumor had grown. I went back on chemo and have been “coaxing” him to eat a little every few nights. He’s not eating like he used to, but at least he’s eating. I’ll take that as the Xeloda isn’t working as well as oxaliplatin and FUDR worked, but I’ll take it if it’s working at all!
The other night I was praying. My prayers are long and I mention quite a few people by name. One of my close friends has IBC. She had a mastectomy in June and radiation ended in Nov. In Jan. they told her one of her lymph nodes is affected again, but so small as to not be noticed if she didn’t have the history. So she is on clinical trials. ANYWAY, I got to her name and the troll showed up in front of her face. He reached into her collarbone area (where the affected node is) and pulled out an M&M looking shape. He put it in his mouth and smilingly chomped away. I got to Kim’s name and he did the same thing with her head (she has cancer in her head… undergoing radiation). And when I got to Tiffany’s name, he did it again to her liver.
Now I get requests. I can’t make him eat, but I tried sending him to a few people. He wasn’t that hungry but I got him to “nibble”. Now I’m going to say “Get your own troll!!! I need mine to eat the crap in my body!!!” heeheeThat’s the story of my troll. I hope you enjoyed it.
