jaminkw
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Posts posted by jaminkw
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Not to make light of a serious subject but this is for Patti B. Looks like we have something else in common. My son (age 42) told me when I was diagnosed that if they gave me any pot to be sure to let him know!
Judy in Key West
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I was hanging out in Port St Lucie with my daughter and grandson waiting to go back up to MDACC for an appointment with a cancer doctor who is up on the Avastin-blood pressure issue. After a three hour drive, they took my pressure: 120 over sixty and a heart rate of 78. I haven't seen numbers like that in a very long time (even before Avastin!). The doc was great, said my PCP had done it perfectly and she wouldn't change anything--it just took a long time for it to come down.
I was supposed to make the 5-hr drive back to Key West on Thursday but made a last minute change Thur am. My new flexibility when it comes to a schedule amazes my family. I'll drive back Sunday after three extra days of "Nonie" time.
Judy in Key West
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Paperback: It breaks my heart to hear things like you wrote in your post. Someone should not have to be battling cancer and worrying about a place to live! I would call each and every community agency available in your town but don't have a whole lot of faith in government agencies. I was reading someone else's problem getting a doctor's appointment and thought about the media. If you can get through to the right person--local TV, Radio, Newspaper--they love human interest stories. I'd leave no stone unturned to get the attention of as many people as possible. There are good people out there willing to help if they know about the problem.
Good luck, Judy in Key West
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Linda: All great ideas but I love Debbie's idea of volunteering at the office or participating in fundraising for his favorite cause. If he's "that kind of guy," I think that would be the real deal for him.
Judy in Key West
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Gracie: I haven't read any of the books yet but have a message for your sister--THERE IS HOPE, BIG TIME. I was diagnosed IIIB lung cancer in November. Got news along the line like no cure but manageable, we hope for stable, after the big chemo (6 rounds) Avastin until the disease progresses, etc etc. On April 1 (no Fool's joke) my CT/PET showed I was in remission. If your sister has tenacity and a sense of humor, she's got a lot going for her.
Judy in Key West
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Patti: I'm going to jump in here and say I love your spirit! The 23rd must seem like ages away but at least it's finally an appointment. With the others, I'll be looking for your post on the outcome.
Best of luck, Judy in Key West
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Tami: I know my oncologist wanted to do an MRI when she felt the need to check for a bleed(s) from Avastin. I protested because of the expense and no insurance so she went with a CT. My guess is expense is probably the reason for the CTs at ERs so I'd go with the group and get an MRI.
In the meantime, I know it must be really scary. It may help you relax a little to know that years ago before I went through allergy testing, I would get what they later called "migraine intensive" sinus/allergy headaches that would cause me to vomit. When they got more frequent is when I finally went for treatment. It hasn't happened again now for years. Take notice if this occurs when you are in a particular environment or after you have a particular food or drink.
Good luck and hope you get back into follow-ups.
Judy in Key West
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Thanks everyone and that round at the Pub sounds great! It has been a lot to take in. The more I talk about it, bringing friends and family up to date, it gets a little more real. Glad I got to the site yesterday am. Traveled to Port St Lucie and couldn't access the net all day. By the time I got on last night, my grandson commandeered the computer. I'll be here a week but will drop by from time to time when I can. I know how important this is to people struggling with this.
Judy in Key West
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It's the day after and I still can't believe it. She didn't use the words NED but she did say: Your scans are wonderful. I consulted with another cancer doctor and he said it was remarkable. You're telling me this woman has lung cancer. I said what about the PET? She said "there was nothing to pick up." She showed me pictures on the computer--the old one that showed the plural thickening, the new one "it's gone." She said if we could just stay on the Avastin "for awhile" and keep the cancer in remission. Yes, I was at MDACC and I asked my husband over and over to confirm she did use the "R" word and he said yes, she did. My blood pressure wasn't too bad, she said, but she wants me to come back next week and see a cancer doctor who is very familiar with the blood pressure issue. I'm doing it!
I can't tell you, all of you who have been so generous and caring to me these last months how much I appreciate it. Like so many others have said, I don't know how I would have gotten through it without you.
Did I say once or twice or three times that I was having trouble taking this all as seriously as everyone else was? I am over the top!
Judy in Key West
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I'm overwhelmed by the hugs that have been sent my way. I really believe in the healing power of group energy. I want to double all the hugs right back to all of you.
Will check in with the results of my CT/PET as soon as I can.
Judy in Key West
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Connie: What you quoted is it. I copied the link from the address bar again. Will paste it here in case I made a mistake the first time.
http://www.canceranswers.com/Unknown.Cancer.html
Thanks for the heads up.
Judy in Key West
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Right now this info may only apply to me as one of 5% to 10% of cancer patients in whom no tumor is found. But just in case someone with a similar story (Val has disappeared) stumbles onto the site, I want to share this.
I followed a link on staging KatieB posted and found reference to Occult Cancer that sounded like mine. I'd never heard the term so I googled the word and found new (to me) information that answered a lot of questions I had about my cancer. After reading the article at www.canceranswers.com/Uknown.Cancer.html, I'm not positive I have a true Occult Cancer but it gives an understandable explanation of how/why a cancer can be found in a location other than the primary origin and several explanations for why a primary tumor is not found and may never be found. I am cursed with a profound need for things to make sense and I hope this info is legit because in light of what I've been told about my cancer--it now makes sense!
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Faith: I got a group hug I requested and went looking for a place to pass it on and found you. What can I say that hasn't been said except I too believe in signs. That belief comes from my experiences as I know it does for you and you family. Hang on to it and stay as strong as you are able for the kids. If you cry, it's not a bad thing for them to see.
My deepest condolences, Judy in Key West
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Thank you thank you thank you all. Didn't realize how much I needed it until I read the responses and they brought tears to my eyes. I'm going to the boards and find a way to pass it on!
Judy in Key West
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In the interest of learning to ask for what I need, could I please have a group hug going into my first follow-up CT/PET since my dx. It is scheduled for April 1st but I'll be traveling to Orlando early Monday and will be out of my wireless range. I'm feeling really positive about it but would feel better with lots of good energy backing me up.
Judy in Key West
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Jen:
I'm too new to give anything but a shorthand response but I'm here so here goes.
Stage II is, as I recall, an early stage cancer which is a good thing. It's usually followed by a letter like a or b. You can google for staging if you want. I did but always have to go back because it's a little complicated. NSCLC as I've been told is usually a more contained, slower growing cancer than SCLC--another good thing. The 1/4 or 1/2 probably refers to how much of the lung was removed in the lobectomy (??the right word??)--another good thing since some peoples' profiles refer to a whole lung being removed. As for the "50/50" and "4%" I don't have a clue. As far as I know to chemo or not to chemo isn't related to the cancer being NSCLC or SCLC.
Hopefully someone with more experience on the subject will respond but, in the meantime, I think your friend is not in a really bad situation if you can say that about any kind of cancer.
Judy in Key West
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Patti:
Thanks for the good wishes. Lisinopril didn't work for me either. The new med together with two of the old is working--131/72! Haven't seen those numbers in awhile. That's why I'm going to depend on the Tylenol to take the edge off the headaches until I go to Orlando on Monday. The headaches now are obviously from the new med as headaches are listed as a side effect.
For once I'm looking forward to going to Orlando. I'll see my oncologist who I only see every six weeks now. And I get my first follow-up CT/PET since dx. Hope it's good because I'm really excited about it--that's how good a feeling I have. Guess "scared" is under there somewhere.
Judy in Key West
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Did I say any of this on the site before? I don't even know. After bragging about how great I felt Easter Sunday, I became aware of what starts as the hints of headaches again. I went to the doctor on Thursday with a bp of 200-something over 118 and got new meds. By Friday evening I confirmed my blood pressure was down significantly and suspiciously the headache got worse after my evening dose. This morning I got out the paperwork that came with my Amlodipine 5mg. Didn't even have to read the fine print. On a short list on the front under "Your Medication: was "May cause headache. Consult Dr if severe."
I don't even know what "severe" is anymore. I'm recalling how paranoid I was about having my lungs checked every time a nurse got near me because of how I wound up an emergency with a white out of the left lung before I was diagnosed. I said to my onc that I was afraid because I was to stupid to know it was happening the first time. She said I wasn't stupid. It was just that I was so healthy! Well, I don't feel healthy now and still don't trust myself to know what's going on. Sometimes I think, I can handle this (the headache) and others I feel like a vise is squeezing my temples.
Can't wait til Tuesday when I go to MDACC and talk to my onc about what's going on.
Judy in Key West
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Mitchell:
So glad to hear the good news with your mom's CT and hope she has a comfortable weekend.
As for you, major congrats! Having quit smoking years ago, I know what a feat that is. Weight is an issue with just about everyone in our family and it's a real bugger. I think your decision to do weight watchers (the only thing that worked for me) and get solidly on an exercise program (probably why WW worked for me) before the surgery is a real plus for you. I've counselled people before gastric bypass (required by some surgeons) and have great respect for people who make this decision after properly informing themselves of the pluses and minuses.
Much luck to you and your mom. You must have felt it uncanny that you were getting your good news while the CT scan was setting things up for your mom's good news!
Judy in Key West
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Hi Gail, hope things went o.k. for you and Hank at the doctor's visit today.
And the rest of you respondents, thanks for giving me lots of reasons for not having asked for a prognosis besides the fact that I'm a coward. I read some statement relative to my cancer stage that included the number five twice and figured I didn't want to know.
Gail, hope you didn't ask and they didn't tell. Doesn't do anybody any good cause they're only guessing anyway.
Judy in Key West
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"SandraL"]thanks Judy. It is comforting to know there are others out there like me. Prior to being diagnosed I rarely went to a doctor. Now, I need to go lots and act on everything. It is hard to change old habits. But you are right, there are many lessons learned and this is just one of them. Best wishes to you with your continued resolve.
Sandra:
Oops, I went looking for you at the end and you were the first response. Sorry about that. Yes, it is hard to change old habits. I remember going to the doctor twice in a couple of months after my annual checkup. I had started six years or so to do them religiously. Guess I thought along with eating better and exercising, they would keep me healthy. Anyway, after my second visit I remarked to me doc that he wasn't used to seeing me between annual checkups. He sure does see me now, and his associates too when he's not available. I am all about lessons and I've identified more than one in this experience.
Thanks for your kind words and good wishes. They are much appreciated.
Judy in Key West
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"Patti B"]Judy -
I, too, was one who never went to the doctor. Guess thats why I was Stage IV on diagnosis!! I grew up in a house where my father didn't believe in docs and that if you were "strong" you would get better on your own....I, too, had horrible high pressure with Avastin maintainence. It took them a while, but they did get it under control.
Patti:
Ditto on that household where you didn't go to the doctor. It's a wonder to me any of us in a particular generation or family situation came out alive! I'm always glad (not for you but for me) to hear someone else who had this issue with Avastin. Not a lot of people seem to have. I have really bad allergy/sinus issues but can tell the difference. My biggest problem is my bp hasn't stayed down long enough for me to find out yet if there are Avastin headaches separate from the bp issue. I hope not. My pressure is coming down slowly after yesterday's change in meds but I still have a killer headache. I call it "head pain" as opposed to a sinus "headache." Thanks for your kind words and support. I really do appreciate this extended family and the love it extends to all of us who struggle with this demon cancer.
Judy in Key West
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This is no time to be timid or to worry that someone may think you're a bother....sometimes I respond better to a swift kick than a hug.
Kasey
Kasey:
Not sure if I'm doing this correctly but am trying to take a page out of Barbara's book and respond to each of you kind women individually. I had to laugh at the thought of me being timid. I can mix it up with the best of them--my PCP on occasion included. The not wanting to bother people though, you hit that one right on. And yes, sometimes I do respond better to a swift kick so thanks for that and the hug. Notice I didn't say anything about arguing with my doc this time though. My daughter laughed when I told her what he said and noted that my family can all tell me what I should do but this time Dr G tells me and that's it. He knows me long enough I guess to also know when I need a swift kick. I think underneath all this is that fantasy that I'm all better now and don't need the maintenance!
Thanks for caring, Judy in Key West
PS I'm not forgetting that your wait for your follow-up is coming soon--somewhere on or around April 9?
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Ever since I was dx'd, I've tried to concentrate on the lessons I need to learn in this process. One is to be more forthcoming with the physicians who are treating me. I'm going to paste my post to Dr West this morning to solidify my intent:
To Dr West: Well, my attempts to try to rationalize not going on Avastin maintenance seem to fail me every time. Yesterday I called and made an appointment at my PCP'office and my regular doctor was in. He's in and out of town and has new docs covering his practice now. I've seen one of them a few times and like him but he's not my regular doctor. My bp was 200-something over 118. I asked him to keep me from stroking out until I went to MDACC on Tuesday so I could talk to my onc about not doing the Avastin maintenance. He looked right at me and said "I'll take care of your bp and you stay on the treatment." He said I look good and am holding my weight so it's doing something. I don't know if I'm sure what's doing what but I trust him. If Dr T backs him up, oh well, I'm with them. The new bp routine is Micardis 80mg, Metoprolol 100mg and Amlodipine 5 mg twice a day. It's working so far to bring it down but the real test will be 8 to 10 days after the next infusion. If it doesn't, he reminded me to call him on his personal cell like he told me to do before. I'm not doing a very good job on the lesson I need to learn about not wanting to bother people. Dr T's PA already admonished me for not reporting side effects to them. She said MDACC is very aggressive in treating side effects.
Dr West, you've been "it" because of the distance the internet offers that makes it easier for me to reach out. But be assured I'm working on that problem and hopefully will start letting my PCP and Onc in on what's going on with me.
Judy in Key West
Hiccups
in GENERAL
Posted
A simple thing you could try. Have your husband put an index finger in each ear. You hold a glass of water to his lips and have him drink as long as he can without stopping while he continues to plug his ears. It works every time for my family and I've used it as a kind of "majic trick" for clients with the hiccups in my office when I was a counselor.
Judy in Key West