Newbie with recurrence

MJ5

Kaleena said:

Have a question.
Did any of you ladies during your time before a recurrence felt like when you went to the doctors that you just went through the motions? Feel kind of lonely because you are NED? I mean like what do you do? You are not in treatment, although you feel all of the anxiety associated with hit. Always feeling like you have to look over your shoulder.

How about this? My family and I are in the process of buying a house. It created great stress for me which I didn't share with my husband initially. Finally, I said what if it comes back? I didn't want to cause any stress or stuff like that. ALthough my PET Scans in June and November were negative, I was to have another one in six months which would be in April. The NP at the office won't schedule me for one saying I probably don't need one.

Then I started feeling a pain in my back below my rib cage and lower back. Of course, I freaked. Then after walking with my friend for 2 miles, I had a little spot of blood which I believe was from my hemmorroid. I called the doctor's office but the NP didn't seemed concern and said to go to my General Practioner.

We got a new mattress and my back pain went away. I have had no more spotting when I wipe.

The move is a good move. Financially it is a good thing. We own our own business and economically it is a smart move. After talking all of this over with my husband, I feel less stress. I should have discussed this all with him before we even started to look!

I see the doctor in June. I keep getting pushed back.

Thank you for letting me share this with you.

Kathy

NED anxiety
Hi, Kathy,

Post-treatment anxiety is perfectly normal. Every new pain, we ask the question "Is it the cancer?" That fear will subside over time. It did for me. And it has for everyone I know that has had cancer.

I am glad you bought a house. It's important that we keep living while we are living, if you know what I mean.

Because I do have a poor prognosis, I kind of put my life on hold. I was like "Well, I don't know what's going to happen, so I can't plan this or that." I finally decided that even if I only have a few weeks to live, I want to move somewhere a little more peaceful than my current house. I am only going to rent, but nevertheless, it is kind of turning point for me to say that I am going to move.

I hope your doctor appt. doesn't get pushed back any further.

I agree with Laura. You will have a future. And I am hoping for that for myself, as well!

Best wishes,
MJ

daisy366

sleem said:

We are here
I do have UPSC. Yet, still feel like sisters. Hold firm... and know you have people out here

Loneliness and anxiety
Hi Ladies,

I am a latecomer to this thread - just read it and can relate to so many of your feelings.
A long time ago I came to realize that even though we share so many things here and with our docs and friends, we are all alone in this fight ultimately. NO ONE really knows what we are dealing with!

It's all pretty scary. And the issue of stress and dealing with insurance is a big one for me too. It seems like I get going on a smooth patch for awhile and then out of the blue some crazy insurance snafu happens and I fall apart emotionally - "why, is this happening? Why does this have to be so hard?"

It's scary to be in treatment and scary to not be in treatment too - "nothing is being done to tame the monster" I think. I finished chemo and radiation for recurrence of UPSC in Nov and am now getting some effects to my blood vessels in my neck. Anxiety. My husband is contributing to it with his worry. I think, is this going to get worse? Will I end up with clogged arteries? possibly a stroke? All real possibilities.

Re: poor prognosis. I struggle with optimism. I liked evertheoptimist's posts - she helped me see things in a brighter light. It's hard to know exactly what to do and not to do. I'm trying to do the best and enjoy life and do things that are healthy but not fanatical. I work part time now, and applied for disability - a recurrence of UPSC was enough to get it smoothly - no lawyers or waiting.

Thanks for giving me the opportunity to share and vent a bit. I am NED and I plan to continue with the simpler and less stressful life.

I wish you all much peace, joy, and blessings. Mary Ann

Ro10

daisy366 said:

Loneliness and anxiety
Hi Ladies,

I am a latecomer to this thread - just read it and can relate to so many of your feelings.
A long time ago I came to realize that even though we share so many things here and with our docs and friends, we are all alone in this fight ultimately. NO ONE really knows what we are dealing with!

It's all pretty scary. And the issue of stress and dealing with insurance is a big one for me too. It seems like I get going on a smooth patch for awhile and then out of the blue some crazy insurance snafu happens and I fall apart emotionally - "why, is this happening? Why does this have to be so hard?"

It's scary to be in treatment and scary to not be in treatment too - "nothing is being done to tame the monster" I think. I finished chemo and radiation for recurrence of UPSC in Nov and am now getting some effects to my blood vessels in my neck. Anxiety. My husband is contributing to it with his worry. I think, is this going to get worse? Will I end up with clogged arteries? possibly a stroke? All real possibilities.

Re: poor prognosis. I struggle with optimism. I liked evertheoptimist's posts - she helped me see things in a brighter light. It's hard to know exactly what to do and not to do. I'm trying to do the best and enjoy life and do things that are healthy but not fanatical. I work part time now, and applied for disability - a recurrence of UPSC was enough to get it smoothly - no lawyers or waiting.

Thanks for giving me the opportunity to share and vent a bit. I am NED and I plan to continue with the simpler and less stressful life.

I wish you all much peace, joy, and blessings. Mary Ann

Mary Ann sorry to hear you are struggling
Sorry to hear you are having issues after your radiation to your neck. What kind of effects are you having with your blood vessels? I thought when your "soreness" went away in your throat you would be good. Sorry to hear that is not true.

I know how you hate to worry your husband, too. Hope your anxiety is relieved soon.

I ordered a shirt from the "Choose Hope" site with the peach ribbon and it says "No One Fights Alone". I feel like I have lots of people helping me in my Fight. I have another shirt which says "Fight Like a Girl" with the peach ribbon on it. I plan on fighting for a long time.

I am reading your favorite book by Simonton, and getting some good ideas on "Getting Well Again" I am practicing the relaxation and mental imagery to help my body fight this cancer. I think my body is stronger than the cancer.

Speaking of insurance, two years after you recieve you first check for disability, you qualify for medicare. I become eligible for Medicare on 4/1/11 and I have my next chemo on 4/5/11. Will be curious about the coverage Medicare and my supplemental give me compared to what my Blue Cross Primary gave me. I found it interesting that when I go on Medicare, to continue Blue Cross as supplemental was more than twice the cost of carrying Blue Cross as a Primary Insurance. Does not make sense to me. They said since I am on 62 the premiums are higher until I reach 65.

Another interesting fact I found out regarding Medicare. If I kept my Blue Cross as my primary, and did not accept Medicare in April. I would not become Medicare eligible until 7/12. We considered that since I have met my deductible for 2011 with Blue Cross. But then that would mean I would have to meet the deductible again in 2012 since Medicare would not kick in until 7/12. I just hope Medicare and my supplemental cover as well as Blue Cross did.

Glad you could come and vent, but I hope your positive imagery gets rid of "Chester" forever. May you continue to enjoy NED. In peace and caring.

daisy366

Ro10 said:

Mary Ann sorry to hear you are struggling
Sorry to hear you are having issues after your radiation to your neck. What kind of effects are you having with your blood vessels? I thought when your "soreness" went away in your throat you would be good. Sorry to hear that is not true.

I know how you hate to worry your husband, too. Hope your anxiety is relieved soon.

I ordered a shirt from the "Choose Hope" site with the peach ribbon and it says "No One Fights Alone". I feel like I have lots of people helping me in my Fight. I have another shirt which says "Fight Like a Girl" with the peach ribbon on it. I plan on fighting for a long time.

I am reading your favorite book by Simonton, and getting some good ideas on "Getting Well Again" I am practicing the relaxation and mental imagery to help my body fight this cancer. I think my body is stronger than the cancer.

Speaking of insurance, two years after you recieve you first check for disability, you qualify for medicare. I become eligible for Medicare on 4/1/11 and I have my next chemo on 4/5/11. Will be curious about the coverage Medicare and my supplemental give me compared to what my Blue Cross Primary gave me. I found it interesting that when I go on Medicare, to continue Blue Cross as supplemental was more than twice the cost of carrying Blue Cross as a Primary Insurance. Does not make sense to me. They said since I am on 62 the premiums are higher until I reach 65.

Another interesting fact I found out regarding Medicare. If I kept my Blue Cross as my primary, and did not accept Medicare in April. I would not become Medicare eligible until 7/12. We considered that since I have met my deductible for 2011 with Blue Cross. But then that would mean I would have to meet the deductible again in 2012 since Medicare would not kick in until 7/12. I just hope Medicare and my supplemental cover as well as Blue Cross did.

Glad you could come and vent, but I hope your positive imagery gets rid of "Chester" forever. May you continue to enjoy NED. In peace and caring.

Ro
Hi Ro,
Thanks for your support. I didn’t mean to sound so dire – ‘cause I’m not depressed. Just venting abit. The neck problem is only a couple weeks old. Just kind of started slowly – when I bend my neck I feel pins & needles go through the left side of my body (almost like electricity). I mentioned to my doc and he said it was from radiation – damage to smaller blood vessels but that my larger vessels would be OK. I hope he’s accurate. I will monitor and if it gets bad I guess I will see someone about it. I need to start the aspirin/day thing. I’m really in pretty good physical shape and plan to join Gold’s Gym tomorrow!!!

Glad you like the book. I think it’s pretty great.

I’m curious about the medicare thing. Did you apply for Disability 2 years ago?? If so, you are lightyears ahead of me. I still have over a year to go till I’m eligible on age – which will be sooner than disability. I appreciate any guidance I can get from you and others going through this. I had a recent change in insurance and ran into a brick wall regarding my port flush. It finally ended up that a home health nurse comes to me!! Doesn’t make much sense to me either.

I hope you continue to do better with your chemo. I had my 3 month check last week and doc could not resist telling me good news about CA125 (our agreement was that he would only tell me if it was bad). But it went down to 9 and HE 4 was 67. Great numbers. So I am good to go for another 3 months.

I sang Mahler’s 2nd symphony with my chorus and a full orchestra last night – it was sooooo magical (check out this link http://www.youtube.com/watch?v=d6idPaGqvV8). We filled the stage at the concert hall with 150 singers and 90 piece orchestra – life really is good, Ro. Our chorus has improved a lot with our new conductor but the symphony couldn’t afford us anymore so we are organizing an independent organization. Pretty exciting stuff – I’m on organizing board.

Thanks for listening to my musings. I think you are inspirational with your positive attitude. I am positive 95% of the time. I’m really fascinated by the placebo effect – I need to apply that concept to myself. I think Simonton’s work is in this realm.

Take care, my friend. Love, Mary Ann

Ro10

daisy366 said:

Ro
Hi Ro,
Thanks for your support. I didn’t mean to sound so dire – ‘cause I’m not depressed. Just venting abit. The neck problem is only a couple weeks old. Just kind of started slowly – when I bend my neck I feel pins & needles go through the left side of my body (almost like electricity). I mentioned to my doc and he said it was from radiation – damage to smaller blood vessels but that my larger vessels would be OK. I hope he’s accurate. I will monitor and if it gets bad I guess I will see someone about it. I need to start the aspirin/day thing. I’m really in pretty good physical shape and plan to join Gold’s Gym tomorrow!!!

Glad you like the book. I think it’s pretty great.

I’m curious about the medicare thing. Did you apply for Disability 2 years ago?? If so, you are lightyears ahead of me. I still have over a year to go till I’m eligible on age – which will be sooner than disability. I appreciate any guidance I can get from you and others going through this. I had a recent change in insurance and ran into a brick wall regarding my port flush. It finally ended up that a home health nurse comes to me!! Doesn’t make much sense to me either.

I hope you continue to do better with your chemo. I had my 3 month check last week and doc could not resist telling me good news about CA125 (our agreement was that he would only tell me if it was bad). But it went down to 9 and HE 4 was 67. Great numbers. So I am good to go for another 3 months.

I sang Mahler’s 2nd symphony with my chorus and a full orchestra last night – it was sooooo magical (check out this link http://www.youtube.com/watch?v=d6idPaGqvV8). We filled the stage at the concert hall with 150 singers and 90 piece orchestra – life really is good, Ro. Our chorus has improved a lot with our new conductor but the symphony couldn’t afford us anymore so we are organizing an independent organization. Pretty exciting stuff – I’m on organizing board.

Thanks for listening to my musings. I think you are inspirational with your positive attitude. I am positive 95% of the time. I’m really fascinated by the placebo effect – I need to apply that concept to myself. I think Simonton’s work is in this realm.

Take care, my friend. Love, Mary Ann

Mary Ann glad you are feeling better
Glad you come here to vent. We all need to vent at times. Sometimes more than others. Sorry to hear about the neck problems. Sound uncomfortable.

I did apply for disability in 4/09. I went to a lawyer in Illinois who specializes in SS disability. Because I was a nurse and unable to work the 12 hour shifts, and should not be around people with infections I was granted the disability. He used something called the "compassionate act". I am not sure of those exact words. I read about applying for disability in the Kris Carr book. So I thought I would apply.

The lawyer took the initial diagnosis from my abnormal PAP that was "highly suspicious for adenocarcinoma" in October 08. I had my surgery 1/09 which diagnosed UPSC STage III-C. And I got my first disability check in 5/09 for both 4/09, and 5/09. You have to be disabled for 6 months before you get your first check. The lawyer I went to only collected a fee is I was approved for disability.

I know Deanna who was also a nurse was approved disability for a certain period of time. But she was only 39 years old. My letter did not have a time limit for the disabililty, but I was 60 when approved. I am pretty sure Deanna was diagnosed as III-C as I was also.

Two years after you receive your first disability check you qualify for Medicare. So that is why I qualify for Medicare 4/11. To be honest with you, I did not think I would ever qualify for the medicare. Knowing the cancer would recur, I am so happy that I have had this long before the recurrence. I plan on getting through this round of chemo and have another long period of no treatments.

I am doing very good with this second round of chemo. I have had some nausea and had to take compazine. It makes me so tired, though, so I tried the Zofran. I did not think it helped the nausea as much as the compazine though. I have not needed any for the past several days.

My thrush is getting some better, but I still have it. I have several days of medicine left, so I hope it goes away. Food is tasting a little better these days. Another week to go before chemo #3.

Your concert sounds wonderful. I plan on checking out the youtube video when I finish here. So glad you continue to enjoy singing. It is such a wonderful outlet. The orchestra and singers sound like a wonderful combination.

I continue to read the Simonton book, and hope to apply some of his ideas into my lifestyle. Thanks for encouraging his book. I think it is helpful.

I am so glad that you say "life really is good". Celebrate each day. In peace and caring.