didnt see this coming
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Topic: didnt see this coming
Posted By: sunbearz
Subject: didnt see this coming
Date Posted: Jan 21 2008 at 2:13pm
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Well, getting ready to start radiation to lymph nodes to neck, Dr called tonight and said blood work is great and tumor marker starting to stabilize with the doxcil.However it also means that if one area starts getting active the others do too. Beacause its all breast cancer.I didnt know this.
Ok now how do I deal with this.Have to do the chemo and rads at the same time. Ok, have to figure this one out.
This is going to be one of those physical endurance marathons.I know I can do it just have to figure out how, and work full time.
Ok God and friends need you now.
------------- Dx 1998 mast.Bone mets 2003 ac/xeloda,zometa,taxotere,,doxcil,rads to hip triple neg brca-gemsar Abraxine 2008 -gemsar/taxol combo Taxotere ,Ixempra,liver, lung Mets Testosterone |
Replies:
Posted By: Sadie-Rose 2
Date Posted: Jan 21 2008 at 2:44pm
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Oh Sunbearz,
Do you really have to work full time? If it is not a financial or insurance issue I would urge you to be gentle with yourself. You may be able to draw disability insurance and some companies allow their employees to share sick leave. It just seems like you have a major challenge right now. You might be able to get an adjusted schedule. One where it is okay to come in late, leave early or have an extended lunch hour. Self care is so important for you physically and emotionally. I will hold you in my thoughts. Warmly, Sadie |
Posted By: fd411
Date Posted: Jan 21 2008 at 3:33pm
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I'm doing whole brain rads and working full time too. It's starting to get hard now. But that brain rads seems much more intense than my other breast, nodes, etc. rads that I got before. Now I have to take so much of that decadron too, and it makes me feel ill. But they had to stop the chemo temporarily for that kind of rads. Something about the skin becoming sensitive on the head and peeling off. But 3 weeks with no chemo, and I think there is activity already with my skin, so I know I need chemo. Chemo and rads together might make you a wee bit tired...I forewarned my boss that at the end of this wbr I'd be taking a day and a half off to recoup. I also got a letter from the rad doc saying how this kicks butt in the tired area. Sunbearz, you might find you will need to take it easy at some point during the course of your treatment...just to get your bearings. Hugs, Ferne ------------- Ferne 2006 - Stage IIIA IDC; TAC, lumpectomy, rads 5/07 Mets to lungs, chest, supe clav and axillary nodes 7/07 Skin mets, neck nodes 9/07 Liver mets, more nodes 1/08 Brain Mets, more nodes |
Posted By: shellieh51
Date Posted: Jan 21 2008 at 3:46pm
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I am a firm believer in taking time off - at least now that I've finished treatment I think it would have been a good thing to do. During 24 weeks of chemo, I may have taken a total of 2 weeks off. My onc said I was a model patient and attributed a lot of my well-being to the fact that I continued working. I just wouldn't advocate it if you have disability coverage - hopefully, with the grace of God it won't be a question with which I have to contend! It is frightening going through treatment and I was afraid to take disability because what if I really needed the time later so I kept pushing on. We don't always think too clearly while in treatment so talk with a good friend too. The fight is different for each one of us.
Bless you. ------------- dx 11/6/2006 1.5cm IDC, Gr3, TN, BRCA-, lump, partial breast rads 1/2007, 4 AC, 12 wkly Taxol. Completed tx 8/2/2007. NED 12/2007. Malignant parotid tumor 4/2008. Clear head 4/09 & bones 11/08 - |
Posted By: sunbearz
Date Posted: Jan 21 2008 at 4:25pm
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I dont have disability insurance, When youve had BC for 10 years every ins co runs.Im the one who says bring it on I can take it as I did 10 yrs ago. However I know im not as physically in shape as I was then.I dont bounce back as well.Im starting to hear your points on taking time off from work and get rest. Even a long lunch hour. I do feel sleep deprived.
Maybe I should start taking better care of myself instead of trying to work so much as a diversion from Cancer. It certaintly isnt going away.
I get your points.
 .Guess today I got hit with a little realty and didnt like it.------------- Dx 1998 mast.Bone mets 2003 ac/xeloda,zometa,taxotere,,doxcil,rads to hip triple neg brca-gemsar Abraxine 2008 -gemsar/taxol combo Taxotere ,Ixempra,liver, lung Mets Testosterone |
Posted By: trip2
Date Posted: Jan 22 2008 at 4:32am
Sunbearz, yesterday was a bad day, I am so sorry you are having to deal with this.
Hopefully your boss will understand and be more flexible with your hours or lands, you need to work out something! You've got to heal your body and you need rest. Could you possibly work from home? ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: trip2
Date Posted: Jan 22 2008 at 4:38am
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Hi Ferne,
How often do you get your rads? I really admire you and it just breaks my heart to see what some of you are going thru, this just has to stop!
I'm glad you'll be able to take a break from work so that you can rest.
------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: shellieh51
Date Posted: Jan 22 2008 at 4:50am
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We all hit that wall and just need to take it easy - like you said, even a long lunch to help rejuvenate yourself. Take care. ------------- dx 11/6/2006 1.5cm IDC, Gr3, TN, BRCA-, lump, partial breast rads 1/2007, 4 AC, 12 wkly Taxol. Completed tx 8/2/2007. NED 12/2007. Malignant parotid tumor 4/2008. Clear head 4/09 & bones 11/08 - |
Posted By: Stacy
Date Posted: Jan 22 2008 at 5:16am
I too do not have insurance other than the VA now. I dealt with working and going through all of the surgeries, and with 7 of those in a year I couldnt work during chemo. I chose to be home with my son and walk him home from school. Since he is the only one I will have I am smothering him with kisses.  He is my inspiration, my love, my 6 year old little boy.
I quit work because I had no pto left, no position would be opened for me, and I was TIRED! SO I get to spend the summers and all school breaks with my son. No, I do not get support from a husband. I am dating, but I still am making my payments due to my va disability from being in the Air Force.
I say, quit work and enjoy life - my mother worked until the day she died and she was in pain and angry. I miss her, I wish she would have quit work for me. Good luck, Stacy
dx 8/2006 stage 0 , double mastectomy with expanders placed . 0 nodes
dx 5/2007 "lump" found in axillary
dx 6/2007 "reoccurance" in axilla largest 2 cm
7/7007 removed 22 lymph nodes 13 positive for triple negative
Interesting though they found spindel cells in my path.
now I am
stage 2b , BRAC1 & BRAC2
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Posted By: fd411
Date Posted: Jan 22 2008 at 3:29pm
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Hi Pam, I have to get 10 Whole brain rads. My last day is tomorrow, then back on chemo. in February, I think. ------------- Ferne 2006 - Stage IIIA IDC; TAC, lumpectomy, rads 5/07 Mets to lungs, chest, supe clav and axillary nodes 7/07 Skin mets, neck nodes 9/07 Liver mets, more nodes 1/08 Brain Mets, more nodes |
Posted By: sunbearz
Date Posted: Jan 22 2008 at 4:39pm
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I start rads in feb. Im already tired.I took some advice and took a long lunch hour and am going to talk to my office manager about an easier position.I have to work full time for my insurance, But If I dont feel like working Ill call in, or rearrange my chemo so I can get an afternoon off.
Got to get my head back in the game.I knew at any time the cancer could crank up again,guess I was hoping it would just stay stable . The Dr did say the chemo was trying to keep it stable.It just got active between scans so there was no way to know this was happening.
Does anyone feel excercise helps or is it better to rest.I feel like a useless blob.
 ------------- Dx 1998 mast.Bone mets 2003 ac/xeloda,zometa,taxotere,,doxcil,rads to hip triple neg brca-gemsar Abraxine 2008 -gemsar/taxol combo Taxotere ,Ixempra,liver, lung Mets Testosterone |
Posted By: shellieh51
Date Posted: Jan 22 2008 at 4:58pm
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My onc has prescribed 3 hours per week of vigorous exercise. I am lucky if I get in 30 minutes but am striving for the full three hours this week - he says it must be cardio vascular but I can get the treadmill to do a CV workout. My brother just had 2 new stents put in last week and he is stuck with exercise too so we've made a pact. My onc says that exercise is the only thing left in my arsenal to prevent recurrence so I've got to get with the program. The exercise is better than the alternative so... ------------- dx 11/6/2006 1.5cm IDC, Gr3, TN, BRCA-, lump, partial breast rads 1/2007, 4 AC, 12 wkly Taxol. Completed tx 8/2/2007. NED 12/2007. Malignant parotid tumor 4/2008. Clear head 4/09 & bones 11/08 - |
Posted By: sunbearz
Date Posted: Jan 22 2008 at 6:23pm
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This is really tough. I feel like Im up against a wall and am sitting down wondering what to do or what I can do.Ive just admitted defeat at work and I was wonderwoman.Im the one who makes others feel better and laugh.I feel like an outsider and defeated.I need a good cry but the tears wont come.I want to be angry but at what.My family is saying you can do this and we need you.We love you.Inside Im feeling where is the strength going to come from? The tears are coming as I write this.
I need the attitude and strength to endure this.Five years of constant Chemo and now rads.Im used to taking care of others,that was my motivation.Now others are worried and taking care of me.Thank God for that, I have such compassionate people in my life. I want to be the strong person again.
What do I do?How do I get back? Ive gotten some great advice here and I know it to be true. Work isnt anything compaired to saving our lives.Exercise and nutrition is important. I need help getting there.I need laughter, but I dont find much funny.
I need an attitude adjustment. Please be truthfull. ------------- Dx 1998 mast.Bone mets 2003 ac/xeloda,zometa,taxotere,,doxcil,rads to hip triple neg brca-gemsar Abraxine 2008 -gemsar/taxol combo Taxotere ,Ixempra,liver, lung Mets Testosterone |
Posted By: cg---
Date Posted: Jan 22 2008 at 8:01pm
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Dear Sunbearz,
Allow yourself this time to decompress. You have been so much for so many in your life, and you give so much of yourself even here on the board trying to lift someone's spirit, being positive, and inspirational. You deserve a break from keeping up the brave face because that is exhausting too. As women we are conditioned to be the nurturer, the solution to every problem, the drier of tears, the port in everyone's storms....and you have been all of that. Just for this one evening, let yourself cry, feel angry, and let out all the pent-up sadness you try to suppress for the sake of others. Don't fight the exhaustion and when you fall asleep tonight...know things are always brighter and more hopeful in the morning. You are human undertaking a herculean task living with your disease. Be kind to yourself tonight and feel the support and hugs being sent your way. You are physically and emotionally worn down. Let others carry you until you regroup. You will know what to do after that.
Good night and good thoughts.
Connie
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Posted By: Sadie-Rose 2
Date Posted: Jan 22 2008 at 8:27pm
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Dear Sunbearz,
I just read your most heartfelt post. Thank you for trusting us to share your inner most thoughts with. I think the biggest lesson I had to learn when I went through treatment was to let others in more closely. My toughest struggle was not the physical things I had to go through. My toughest challenge was having my image, the one I held of myself being chipped away. My image of never needing to be taken care of was not true. I was human and I could crack. I think that thought was tougher than losing my hair or having my breast altered. This imagery helped me; maybe it will be useful for you too. When I am struggling with a huge problem it helps me to imagine a little girl I am taking care of. In this story, this little girl is very sick. She’s been fighting for 5 years. Now the doctors have told her she has to do another treatment. She is sad. She is scared. She is tired of the fight tonight. How would you help her get through the night if you were her mother? Would you tell her to buck up and go to school in the morning? Would you tell her to act like nothing was going on? Most likely you wouldn’t. You might scoop her in your arms, hold her very closely and tell her she is not alone. You might let her rest her head on your shoulder and tell her it is okay to be sad. This has been hard. It’s okay to cry. It’s okay to hit your pillow. It’s okay to scream. It’s okay to be scared; and I will stay with you. You might stroke her hair, sing to her or rock her on your lap till she falls asleep. Then you would tuck her in bed for the night. Those of us who are caregivers can do these things for others, but we have a very hard time doing them for ourselves. Sometimes if we think about how we would console another person it will help you be more gentle with yourself. Hold yourself tenderlytonight and we will see you in the morning. Warmly, Sadie |
Posted By: texasgirl
Date Posted: Jan 23 2008 at 9:05am
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Dear Sunbearz, I cried when I read your post. You are very brave, but let your loved ones help you. Have you looked into Federal and State disability. I do know that once you are diagnosed Stage IV you can get federal disability after 6 months. They even will go back to the original date you were diagnosed. You can still continue working, but I believe you can only make $900 a month. Also, most states have plans that will help pay your insurance while you are on disability. I would contact a social worker at the hospital or clinic where you are being treated to see what if they can help you with benefits would be available to you. As my therapist told me, you do not want to overdo it because your body has to heal during treatments. If you need any help researching this, PM and I will see what I can do. ------------- dx 5/11/07 (Age 41), Stage IIIC, Grade 3, 12 weekly taxol, 4 FAC, 8.5 cm, Extensive positive nodes, Masectomy 0/17 nodes, 30 Rads, Currently NED |
Posted By: sunbearz
Date Posted: Jan 23 2008 at 5:10pm
 You all all such compassionate, warm, caring women. I called in sick today for some much needed sleep and me time.You gave me so much to think about.
I will look into disability, so If I need it, Its there. I would welcome more info.
Im going to ask about working 4 days a week while I go through this.
And I will treat myself better as I would my children.
Thank you so much. Im working on digging my self out of this hole. ------------- Dx 1998 mast.Bone mets 2003 ac/xeloda,zometa,taxotere,,doxcil,rads to hip triple neg brca-gemsar Abraxine 2008 -gemsar/taxol combo Taxotere ,Ixempra,liver, lung Mets Testosterone |
Posted By: texasgirl
Date Posted: Jan 23 2008 at 10:24pm
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Hi Sunbearz, below is an explantion of Social Security disability benefits. It says lung cancer, but all Stage IV cancer's are eligible. I also put the website where you can apply online and calculate the amount of your benefit. You also can take a total of 12 weeks a year off for Family Leave Medical Act (if you company has more then 50 employees) . If you come back before this time is up they have to give you a job back. Also, I believe that your health insurance will stay the same during this time. If you do not go back you can COBRA your health insurance up to 29 months if you are considered disabled. That way you have insurance until you receive medicare. If you send me the state you live in, I will see if you have any state benefits. A lot of states will help you pay your health insurance if you are disabled. I hope this information helps. http://www.socialsecurity.gov/pubs/10029.html - http://www.socialsecurity.gov/pubs/10029.html We have many new family members and I believe the time has come to again discuss Social Security and Stage IV Lung Cancer. (1) Stage IV NSCLC is an automatic Social Security Disability. All that you need to do is go to your local Social Security (US only) Office and apply. The things you need are just the name and address of your Oncologist, not family doctor, but your Oncologist. This is very important. Social Security will help with the appication process. (2) Waiting time for a decision is usually only 2-3 weeks. When they give you decision they will also give you your start date and your pay start date. Several factors could influence their decision on your start date. (3) Whatever date they set for your start date, it will be 6 months from that date before you will get your first check. The day of payment will vary according to the date of your birthday. They will pay you on the Wenesday preceding your birth date in each month. (4) Medicare will start 2 years from the pay start date. So if your pay start date, for exam[le is August 2006, Medicare will kick in August 2008. When I applied in the summer of 2003, right after going to Stage IV, I fully expected my start date would be the day I was told I was now Stage IV, but, instead, they back dated to the day I retired from my civilian employment, which was February 28 2002. For your pay start date it is always calculated on the first of the month. Example: My start date was February 1st. My pay start date was August 1, 2002. So when I received my first payment it was for 13 months of Social Security. Somewhat of a windfall for me. I must caution you however, each individual case is handled differently according to your own personal circumstances. So, please don't tell them that you know somebody who gat paid on such and such date. (5) Medicare: a month before Medicare kicks in, you will get a notice in the mail. When you get this notice, concerning Medicare, fill out the form and mail it back, It is highly advised that you sign up for both Part A and Part B. Part A covers your medical care, such as doctors, nurses, outpatient CT scan or x-rays, and any other outpatient procedures deemed necessary. Be cautious, however about Physical Therapy, as there have been some recent chages to that part of Medicare. Check with your locat office. There is a deduction from your Social Security for Part B, but take it as it will save you much money in the future, This information is not always disiminated to us as patients. Fortunately I have a sharp social worker who brought this to my attention. So, the bottom line is check with your local office for Social Security. To the best of knowledge only Stage IV qualifies, however, if you are Stage III it may be worth your while to check as well. I can only go by what was told to me and what happened after I applied. ------------- dx 5/11/07 (Age 41), Stage IIIC, Grade 3, 12 weekly taxol, 4 FAC, 8.5 cm, Extensive positive nodes, Masectomy 0/17 nodes, 30 Rads, Currently NED |
Posted By: trip2
Date Posted: Jan 24 2008 at 3:44am
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Good morning Sunbearz and I hope taking yesterday off from work has helped you feel better.
You've gotten some good advice from the previous posts and I'm glad to see you will be looking into making some adjustments so that you can heal from your treatments. When we are tired and run down it can make us even more emotional, rest can do a world of good and time!
Bless your heart, I wish I could give you a big hug. We are here for you anytime you want to talk and you will get out of that hole.
------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: shellieh51
Date Posted: Jan 24 2008 at 4:25am
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Texasgirl,
You are an angel to dig this info out. Bless you. ------------- dx 11/6/2006 1.5cm IDC, Gr3, TN, BRCA-, lump, partial breast rads 1/2007, 4 AC, 12 wkly Taxol. Completed tx 8/2/2007. NED 12/2007. Malignant parotid tumor 4/2008. Clear head 4/09 & bones 11/08 - |
Posted By: sunbearz
Date Posted: Jan 24 2008 at 1:38pm
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Thank you. I live in florida. I certianly need a backup plan.I would be foolish to think nothing is ever going to happen. I took another day off from work today.Had to have more sleep. I feel mentaly better. I see the Dr tomorrow and will discuss this with her.Thanks Texas girl for your research and time , and everyone who has helped me dig myself out of this hole. ------------- Dx 1998 mast.Bone mets 2003 ac/xeloda,zometa,taxotere,,doxcil,rads to hip triple neg brca-gemsar Abraxine 2008 -gemsar/taxol combo Taxotere ,Ixempra,liver, lung Mets Testosterone |
Posted By: texasgirl
Date Posted: Jan 24 2008 at 2:13pm
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Hi Sunbearz, gald to hear that you are going to talk to your doctor about disability. He will need to sign documents that state you are Stage IV so its best to get him the document ready. Below is a link to Florida insurance issues. If you read through it there is a number that help you with assistance on applying for benefits. There is also pharmacy assistance. My sister who is a single mom with premies twins so she could not work and she got Medicaid right away and they decided to pay for her employer's insurance instead of getting Medicaid. Good luck! http://covertheuninsured.org/stateguides/english/FL.pdf - http://covertheuninsured.org/stateguides/english/FL.pdf ------------- dx 5/11/07 (Age 41), Stage IIIC, Grade 3, 12 weekly taxol, 4 FAC, 8.5 cm, Extensive positive nodes, Masectomy 0/17 nodes, 30 Rads, Currently NED |
Posted By: trip2
Date Posted: Jan 24 2008 at 3:17pm
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Yes Sunbearz, tell the doc everything that is going on and hopefully they can help you with some of this and take some of that pressure off of you, you don't need it. Let us know how it goes tomorrow,
Texasgirl thank you so much for sharing this information, that's very kind of you. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Sadie-Rose 2
Date Posted: Jan 24 2008 at 7:37pm
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sunBearz,
Just thinking about you today and hoping your appointment goes well tomorrow. I'm sending you lots of positive energy~~~~~~~~~~ Warmly, Sadie |
Posted By: Ronda
Date Posted: Jan 25 2008 at 7:50am
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Dear Sunbearz,
My heart aches for you. You're fighting the good fight for yourself, your family and all of here on this site. You sound soooo tired. Drastic times call for drastic measures.... have you read "The cancer battle plan" yet? This may be the answer you're looking for regarding nutrition. There is alot to alkalizing and detoxifying your system and the has been many miraculous recoveries when we oxygenate the blood, not just from cancer, but from other ailments as well.
Vitamin D and B complex (plus taking a sub-lingual b 12) will help with energy (don't take B comlex on an empty stomach, it will make you hurl). If you can find someone who pratices chinese medicine, I've heard amazing stories with regards to side effects and rads. If you'd like I can try to get you a referral, we have a teaching center here in Portland Oregon.
I also had Reiki energy work done by a Reiki master, it did help with my energy levels, but not as much as the vitamin D did.
Life is complicated enough without having to go through what you're going through and when you're tired, it's easy to want to give up just so you can rest. I wouldn't focus as much on the excercise as I would the nutrition. Nutrition is your life source, so if you pick one, pick that.
"The Ph Miracle" is another good book with recipes to help, we need to get your energy back quickly in between treatments.
This is kind of wierd, but I recently discovered Edgar Cayce, He was a well documented psychic that died in the 1940's. He had no background in medicine in a day an age when the doctors had only a very primitive knowledge of medicine themselves. He had many revolutionary healing techniques that are still in use today. There are volumes and volumes of his readings. Some of his prophicies have been realized, some have not. What he spoke of regarding cancer is alkalizing the system, detoxifying the body through elimination and oxygenating the blood with UV lights and animated ash (I think this is was vitamin d helps with). I believe there is truth in this, but it's not an easy process. I have been doing alot of the stuff, but it's hard. I'm finished with my treatments so I've been a bit flaky (denial) about sticking to it, but I'm mostly good! The gal in "The Cancer Battle Plan" was stage 4 BC and got it out of her body in 5 weeks using these methods.
Let's face it, we put our lives in the hands of these doctors to cure us, and they poo poo the nutrition and alternative stuff, but the truth is, they're not that good at it. When they chemo 100 women to save 12 using their morbid horse race calculations and then send all 100 chemo'd women to fend for themselves pumping them full of pharmacueticals that have there own side effects to deal with the side effects of the chemo. But we do it cuz that's all we got. But we can do this other stuff too. I wish it were easier 'cuz food is sometimes our only comfort in this crappy ordeal, but it also is the key to recovery.
I will help you in any I can, we're all in this together.
Hugs, Ronda
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Posted By: sunbearz
Date Posted: Jan 25 2008 at 4:47pm
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Well Had a long talk with my Dr.I solved a lot of issues today.
Im cutting down my work hours and its ok with them. Ive been offered a less taxing position-same pay.The Dr said Stage iv patients are elgible for disability and she would sign papers any time I wanted.Im going to look into it even though Im not quite ready for it yet. But I want it ready if I do.
They are going to stop the Chemo for the 4 weeks I have rads.
She said Im a good candidate for many new Chemos coming out soon.
I asked about Vit. treatments ,Detox and all the things Ive been reading.
She said I could get other opinions if I wanted, But the truth is the cancer is throughout my body and noone knows where it travels and the Chemo has helped me for over 10years.As I look back at the posts I realize everyone is pretty much on the regime, just different stages.
Of course good nutrtion plays a big part in helping us feel better, but as far as the cancer. Its there and thats all there is to it.In stage iv its systemic.
I commend those who are trying all kinds of different ideas-you never know.Some things can be harmful mixed with Chemo and can interfere with blood levels.
So thats where Im at.I am going to look into aspects of healing with relaxation and that area.I will take my vitamins and try to exercise more to get more oxygen-slowly.
Thank you all ------------- Dx 1998 mast.Bone mets 2003 ac/xeloda,zometa,taxotere,,doxcil,rads to hip triple neg brca-gemsar Abraxine 2008 -gemsar/taxol combo Taxotere ,Ixempra,liver, lung Mets Testosterone |
Posted By: texasgirl
Date Posted: Jan 25 2008 at 5:30pm
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Great news about your job. Obviously, your employer realizes your contribution to your company and is willing to work around your treatments. Your doctor is right there is so many new treatments for Stage IV TN BC. Just look at the clinical trials posted on this website. You are an inspiration to me and others on your 10 year battle to fight this beast. ------------- dx 5/11/07 (Age 41), Stage IIIC, Grade 3, 12 weekly taxol, 4 FAC, 8.5 cm, Extensive positive nodes, Masectomy 0/17 nodes, 30 Rads, Currently NED |
Posted By: sunbearz
Date Posted: Jan 25 2008 at 6:49pm
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If It had not been for you wonderful ladies ,I would still be in my box, working myself to death . You have turned my thinking around and have given me options and did footwork for me I couldnt or wouldnt have done.
Im feeling really free tonight and happy.
My daughter said tonight "Its about time you started thinking of yourself"She said all you have done is given and worried about others.
She and my son gave me a gift cert at a day spa for christmas , but they wont do massage, but they do have REIKI and other things I can do. Now I have a day off I can do it.
 My dr also gave me a Disabled parking papers because my hips have been radiated and at times when its cold, they are painful and stiff.At 53 I thought Gee I can walk. My daughter said "mom sometimes I see you limp and know they hurt"I wanted to say "Oh no Im fine". Instead I said youre right .Why should I try to endure more than I have to.She said Mom you have worked so hard all your life"Take all that is offered. How can a 28 year old have more common sense than me?
Im getting my old fight back again for the real reason-to find a cure.I dont take medications and I want to plough through all these Chemos for the one that works.I know its there.Im living proof they work. And a good deal of thanks goes to those before us. ------------- Dx 1998 mast.Bone mets 2003 ac/xeloda,zometa,taxotere,,doxcil,rads to hip triple neg brca-gemsar Abraxine 2008 -gemsar/taxol combo Taxotere ,Ixempra,liver, lung Mets Testosterone |
Posted By: Sadie-Rose 2
Date Posted: Jan 25 2008 at 8:27pm
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Sunbearz,
You have such wonderful kids. How thoughtful of them to give you a day at the spa. I hope the spa treats you like a queen. You are an inspiration for us all. Sadie |
Posted By: shellieh51
Date Posted: Jan 26 2008 at 4:43am
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You sound so much better and I am happy for you. I think that part of the battle is learning to live with the limitations - we are not the same people. Kudos to your company for cutting your hours and taking care of you. Bless you - you are in my prayers. I know I post this site frequently but feel it has been good for my well being - http://www.thecancercrusade.com - www.thecancercrusade.com . They have weekly affirmations that are very inspiring to me.
Take care. ------------- dx 11/6/2006 1.5cm IDC, Gr3, TN, BRCA-, lump, partial breast rads 1/2007, 4 AC, 12 wkly Taxol. Completed tx 8/2/2007. NED 12/2007. Malignant parotid tumor 4/2008. Clear head 4/09 & bones 11/08 - |
Posted By: Ronda
Date Posted: Jan 26 2008 at 11:53am
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Good For You Sunbearz!
Where ever you can pull your strength from singing Janis Joplin at the top of your lungs to silent meditaion in nature this is YOUR life to LIVE how YOU need to. Before I was first diagnosed I could feel my life leaving my body, it was very validating to know there was something wrong and that my life WAS leaving my body. I remember one night lying next to my husband and crying becauuse I felt so guilty wanting to rest (and maybe even die). I never told him any of this, but it was in that moment that I realized that I really needed to learn to take care of me, because after all without me they would all surely starve to death and have miserable lives (o.k. so I have delusions of grandeur!) So I have been selfish for the last year eating what I need, reading what I need, sleeping when I need it, cleaning when I want to. Now there is much more of me to give because I feel good inside and out. I know the docs do there best to save our lives and they are getting better at it. We're all in this together and every little bit helps. It's o.k. to take care of yourself how ever you choose to. I'm glad you're getting your fight back!
Ronda
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Posted By: trip2
Date Posted: Jan 26 2008 at 12:21pm
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I am so happy for you Sunbearz. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: sunbearz
Date Posted: Jan 26 2008 at 6:02pm
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Your Right Ronda. I know what you mean. I was feeling the life was being sucked right out of me and I didnt care. Especially work. Thanks to all of you I have options.I feel alive again.Today I learned an important lesson.
Being out in public around other people is so important.
I live in a beautiful area on the west coast of Fl. Havent been to the beach in 2 years. Some relatives showed up today and decided to show then around town ,and beach areas.I had forgotten about nature ,birds and dolphins,people fishing. The sound of the waves, salt air.Just talking to regular everyday people.Eating hot dogs on the beach.
It dawned on me that I havent been living, only existing. Work, treatments, home,tv, sleep.
I was watching the tourists who spend hundreds of dollars a year to experience what I can, any day any time.The beautifull sunsets,rainbows, with seagulls and pelicans flying their last flight of the evening.You couldnt get any closer to God.Gods beauty at my finger tips and I have been looking the other way-or have forgotten whats really important.Also a lot of Vit D in the sunshine.
Thank you for pouring your hearts out for me , your words and actions
with quick helpful info that I needed Immediatly.Im also there for you.
------------- Dx 1998 mast.Bone mets 2003 ac/xeloda,zometa,taxotere,,doxcil,rads to hip triple neg brca-gemsar Abraxine 2008 -gemsar/taxol combo Taxotere ,Ixempra,liver, lung Mets Testosterone |
Posted By: Ronda
Date Posted: Jan 26 2008 at 7:23pm
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Wow Sunbearz, You're in paradise...you actually get Vitamin d for FREE!!! I'm stuck in cold dark Oregon for the season praying for the tulips to bloom, thats how I know I survived another Oregon winter. You sound like you're doing much better... I highly recommend Pat Benetar's Greatest hits... especially her song "All fired up" "....now I believe there come's a time when everything just falls in line. We live and learn from our mistakes, the deepest cuts are healed by faith...ALL FIRED UP!!!"
Now that'll get some oxygen flowing through your blood and send the seagulls flying singing that at the top of your lungs!
Have a good night!
Ronda
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Posted By: Sadie-Rose 2
Date Posted: Jan 26 2008 at 7:32pm
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Sunbearz,
I was reading your last post and enjoying your rediscovery of the beach, nature and wonderful sensory sensations you were feeling. I also read your heartfelt thank you to the lovely and caring women here. A sense of appreciation and gratitude deeply touched me. I realized as you were saying thank to us that we were really the ones who owed you a thank you. Thank you for sharing your intimate feelings with us. Thank you for letting us journey with you. Thank you for high lighting the richness of life. Thank you for sharing the story about your kids. Your story brought up a memory for me that was filled with sensations too. When I finished treatment and my hair had just started to grow in, I stood in the walkway to my house and just enjoyed the wind lightly tousling my hair around my ears and face. I just stood there and enjoyed the cool breeze blowing across my forehead. The sun was warming my cheeks and I remember thinking life is so good. So I thank you too for helping me relive that memory. Have a wonderful weekend. Warmly, Sadie |
Posted By: sunbearz
Date Posted: Jan 26 2008 at 8:48pm
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Ronda and Sadie,It warms my heart That maybe Ive helped you too.
Rhonda I love music ,I,love melissa etheridges song "Refugee" after her breast cancer.The video shows a fight to live. I love Pat Benatar.I also like Yanni . Metallica ,when Im mad ,but dont tell anyone. After all ,Im 53and a mother.
Sadie, we are all on this journey, some deeper than others. Because of what you said , Tomorrow Im taking my bandana off to feel that breeze. I have some hair and I too ,want to feel the warmth.
Im here for the real deal. not to whine, but get to the gut of what were dealing with.It comes from the heart and reality.
When we have to deal with reality we need answers and help that are
genuine.
I will be thinking of you and the lessons I have learned. We are helping each other.One persons downfall is anothers uplifting.
We have to suceed in this journey.It cant fail.We have too much to offer others.I pray that God saves us to help others. ------------- Dx 1998 mast.Bone mets 2003 ac/xeloda,zometa,taxotere,,doxcil,rads to hip triple neg brca-gemsar Abraxine 2008 -gemsar/taxol combo Taxotere ,Ixempra,liver, lung Mets Testosterone |
Posted By: shellieh51
Date Posted: Jan 27 2008 at 7:58am
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Sunbearz,
I am so happy to hear that you are feeling better and are appreciating the little things in life - stopping to smell the roses. You are in my prayers.
Take care. Hugs.
Shellie h ------------- dx 11/6/2006 1.5cm IDC, Gr3, TN, BRCA-, lump, partial breast rads 1/2007, 4 AC, 12 wkly Taxol. Completed tx 8/2/2007. NED 12/2007. Malignant parotid tumor 4/2008. Clear head 4/09 & bones 11/08 - |
Posted By: Ronda
Date Posted: Jan 27 2008 at 8:25am
| Amen Sunbearz!! Metallica...Wow, you're a bit of a rebel. I've always had a soft spot for AC DC!! |
Posted By: trip2
Date Posted: Jan 27 2008 at 11:04am
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Sunbearz taking that bandanna off today and feeling the breeze sounds wonderful. I wish I could walk with you, I would just throw my cap into the water.
The breeze, water rolling in, the birds, all of those things sound so relaxing and hopefully bring some peace into our hearts and minds. I will
be there with you in thought and a big hug. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: sunbearz
Date Posted: Jan 27 2008 at 6:40pm
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When I labeled this topic "didnt see this Coming"is so true to all breast cancer survivors, what ever stage were in.From the first words of we have cancer to the latter stages of struggle, and all the in between.its something we didnt think was going to happen to us.
Thank God we have each other. Its from the first experience of loosing hair,taste,operations, treatments, scans.The fear of are we ok or not.The experiences of something has gone wrong or I dont feel quite right.Is what I feel real or not. Financial situations.work.
What a load to put on women who thought everything was going to be normal forever.
We compare treatments, look for whatever we think might help us and others.
We are a group of proactive women.Gee we could all be President of the United States.
Im going to fight hard and win. Ive lost my hair 3 times,and my nails and Im almost back to normal physicaly.Appearance wise.
I came to this website because people here take the time to help others and is not superficial like other sites.
Thank you all for giving your time and knowledge to me. As I will you.
------------- Dx 1998 mast.Bone mets 2003 ac/xeloda,zometa,taxotere,,doxcil,rads to hip triple neg brca-gemsar Abraxine 2008 -gemsar/taxol combo Taxotere ,Ixempra,liver, lung Mets Testosterone |
Posted By: English Jan
Date Posted: Jan 28 2008 at 2:33am
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Hey Sunbearz,
So you are on the West Coast of FL, me too.
I'm in Englewood.... rinky dink seaside town.
Are you far away?
Read your posts, thanks a bunch .. if you want a cup of tea one afternoon .. let me know.
I went without hat or bandana etc from the beginning. I have a loop I like to drive, up the caye and round.
When I feel really up to it, I stop and walk the beach a little. I know what you say about others showing you (again) of the beauty and delights of our tropical florida "home".
My relatives come from England save all year, to come for 2 weeks and I have the place for 52 weeks and hardly get to the beach!
Mind you God bless the Canadians and Snow birds who brave the "cold" Gulf .. I won't go in until the water is close to 90 degrees!!
Anyway if you want PM me, re " a spot of tea" or just a chat, know you have someone close by also.
Later
English Jan
PS Last rad today!! ------------- FL. 58yrs DX LIDC 8/18/07. 08/23/07 Lump+SNB Node -ve. T2.5cms clear margins, TNBC, Stage 2A Grade 3. 9/18/07 TX Cytoxan+Taxotere.Neulasta.4x3 wks.Rads 30+5 FINISHED 28th Jan 2008. |
Posted By: trip2
Date Posted: Jan 28 2008 at 5:32am
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Sunbearz your last post was so well said! Just another reason to admire you, for being able to put your thoughts thru the keyboard and onto the screen to share with us. I fumble so.
Oh and I too am a Yanni fan. I find his music relaxing. I saw him at a live concert as a gift from hubby when I had just finished my treatments from the first round. Yanni is a little cutie!  ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Sadie-Rose 2
Date Posted: Jan 28 2008 at 6:09am
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Hi Sunbearz,
How are you doing today? I was just thinking about you and thought I would check in to see how it is going? Do you go to work today or do you get to stay home? I am home today. We had a beautiful snow here in the Northwest. When it snows even a little bit the schools close down and it is like a holiday. The trees are dusted with white and it looks like a winter wonderland outside my picture window. I'm going to go for a walk soon and make footprints and paths around my neighborhood. I hope you feel all the warmth being wrapped around you today by the loving women in this group. Warmly, Sadie |
Posted By: sunbearz
Date Posted: Jan 28 2008 at 4:59pm
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You guys are great.I love the interaction were having. Some from the cold north enjoying its beauty as well as the south and from everywhere in all walks of life.A group of strangers who care for each other.We know more about each other than we know about our neighbors.
Jan, i am in Venice fl.Sadie, I love the beauty you see in everything.You are so positive.Pam, I saw Yanni 3 times, and I tell you , There is something about that man.
Im doing good , I think. Terrified about the radiation in a week .But I want the cancer gone there.My family is a little worried, But Ill be fine.Im going to the catholic church Sun. as it is some saint that is the Saint Of Throats Sunday.Im not Catholic, Im sure God doesnt care.
Im at my no stress job now 4 days a week.It was good.I ran a medical office, now I do billing stuff.
Funny thing happened today. Went to get my handicap sticker ,and That felt so strange.I felt
guilty like I should have gone in with a wheelchair.The person said"Can I help you sir? {the bandana thing I guess) I said Im a Mame. I felt like everyone was looking at me because being in Fl. I was the youngest one there.Like , I really have to explain.
They were looking at me, Like whats wrong with you?To humor myself I thought "well the next big sale at a store, I will be in front of you!
As you can see Im starting to get my humor back. ------------- Dx 1998 mast.Bone mets 2003 ac/xeloda,zometa,taxotere,,doxcil,rads to hip triple neg brca-gemsar Abraxine 2008 -gemsar/taxol combo Taxotere ,Ixempra,liver, lung Mets Testosterone |
Posted By: Ronda
Date Posted: Jan 28 2008 at 7:40pm
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Hey Sunbearz,
As a Realtor I can tell you one particular Catholic saint has always come though for me, St. Joseph, the saint for families (I'm not Catholic either). Everytime I've had a family use him, their home sold before they ran into trouble. I bet he's working overtime these days! Good luck with the rads and congrats on the handicap pass. Have you read the Crazy Sexy Cancer book?? It's a movie too, but I've only read the book. It's a kick! I highly recommend it to help get your groove back. She says if anyone comments on the no hair thing a good response is "My hair style is compliments of my oncologist!" she's cute.
Good Night
Ronda
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Posted By: sunbearz
Date Posted: Jan 29 2008 at 3:33pm
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Thanks Ronda, What A good line!Thanks for the movie idea.
A co-worker of mine brought in some holy water she got from the river in Israel I think and blessed me with the hail marys . Im not Catholic so Im not sure if I have the right country.Anyway my best friend and Daughter are going to church Sun.Were going to go to mass and be blessed by the saint B-something.Then were going to the beach for a hot dog and watch the Super-bowl.
Hey I have a life and plans.
Thurs I go to the Rad Onc. to have the beams placed in the right position.
Next week its Game time.I pray they can keep the beams off my throat and hit only the lymph nodes. If I was a candidate for surg, they could take out the bed ,but I cant have any surg of any kind.
Please stay with me with your words of wisdom and help.
I had radiation once and thought it was no big deal until the end . So I already know what it is like.Then I have to jump right back on the Chemo.
I think Im ready. ------------- Dx 1998 mast.Bone mets 2003 ac/xeloda,zometa,taxotere,,doxcil,rads to hip triple neg brca-gemsar Abraxine 2008 -gemsar/taxol combo Taxotere ,Ixempra,liver, lung Mets Testosterone |
Posted By: shellieh51
Date Posted: Jan 29 2008 at 3:43pm
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Good luck and best wishes to you. You are a trooper. Take care. ------------- dx 11/6/2006 1.5cm IDC, Gr3, TN, BRCA-, lump, partial breast rads 1/2007, 4 AC, 12 wkly Taxol. Completed tx 8/2/2007. NED 12/2007. Malignant parotid tumor 4/2008. Clear head 4/09 & bones 11/08 - |
Posted By: Ronda
Date Posted: Jan 29 2008 at 4:03pm
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Hey Sunbearz, I didn't have radiation because I went with the mastectomy and was node negative... BUT the naturopath that I was seeing also was an assistant at the Chinese medicine school here in town. She said they actually had radiation oncologists attending the seminars because they were so impressed by the lack of side effects and the radiation's effectiveness on their patients who were received this treatment. I found these articles on the subject. The site I found was some kind of new and exciting search engine with a bunch of ads on it...so now you can find out about chinese medicine and shop at the same time!!! I totally don't know about any of the stuff their talking about...because I don't speak chinese, but it may be worth a look and maybe a consult with someone in your area.
http://findarticles.com/p/articles/mi_m0ISW/is_277-278/ai_n16702336 - http://findarticles.com/p/articles/mi_m0ISW/is_277-278/ai_n16702336
Happy Super Bowl!!
Ronda
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Posted By: sunbearz
Date Posted: Jan 29 2008 at 5:23pm
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Ronda, ill ask my rad onc about this.I had a rad mast and nodes removed. Only rads I had was to a hip,now to lymph nodes in the neck.Im just not thrilled about the area. I have never heard anyone having a problem with this area.Of course I was the first woman on the west coat of Fl to have a sentinal node bx and in 1998 they didnt know much about that.Go figure I would be the one to have some obscure issue. A guinea pig to say the least.But its ok. ------------- Dx 1998 mast.Bone mets 2003 ac/xeloda,zometa,taxotere,,doxcil,rads to hip triple neg brca-gemsar Abraxine 2008 -gemsar/taxol combo Taxotere ,Ixempra,liver, lung Mets Testosterone |
Posted By: cg---
Date Posted: Jan 29 2008 at 5:52pm
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Dear Sunbearz, Since my mother was certain I had a Book of the Saints (in case I forgot them)...I can tell you for certain St. Blaise is the Patron Saint of sore throat - (maladies of the throat), a candle is placed on either side of a person's throat-neck region and receives a blessing. Apparently, St. Peregrine (Patron Saint of Serious Diseases) is in charge of cancer. Because in the Prayer to St. Peregrine it says, "You, who for so many years bore in your own flesh this cancerous disease that destroys the very fiber of our being, and who had recourse to the source of all grace when the power of man could do no more. Ask of God and Our Lady the cure of these sick persons whom we entrust to you.....Aided in this way by your powerful intercession.
Of course, my Cathechism skills were a little rusty until my dear mother gave me a not so gentle reminder to get praying......and she started lighting the candles in churches, saying Novenas (for special intention), having masses said, and prayers everywhere.
I guess that is why it is sometimes called 'blind faith'.... we may not see it working but countless others have proven it does ... when nothing in science can explain why some patients recover.
I did those nuns proud....remembering all of the above. I was just filling in the names of the Saints in charge. I figure they must have been unionized. St. Anthony - in charge of lost items....St. Joseph - the carpenter. Yup, I definitely think it was a union shop!
cg
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Posted By: sunbearz
Date Posted: Jan 29 2008 at 7:06pm
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cg, you are a saint. Im sure you know how I was feeling .Im going to a strange church I know little about, but i believe in it and I couldnt remember the saint or what it was going to be about.
You have helped me a lot. Good for your mother. Now I also know the saint for cancer.
Im not going to say too much now, But something happened today which
changed everyone at work today and I have two people going with me Sun to Mass. I hope the church doesnt mind me being there because Im not Catholic
Glad I helped you to remember the saints, may need your memory again.
This Sun Saint Blaise.I got it.
Thanks ------------- Dx 1998 mast.Bone mets 2003 ac/xeloda,zometa,taxotere,,doxcil,rads to hip triple neg brca-gemsar Abraxine 2008 -gemsar/taxol combo Taxotere ,Ixempra,liver, lung Mets Testosterone |
Posted By: EWKSeattle
Date Posted: Jan 30 2008 at 7:04am
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I've been reading this thread since it started, and I am in awe of you, Sunbearz.
Like you, I've been working full time through 2 years of nasty treatment, and now I have mets and feel like I'm starting over. Worst of all, preliminary indications are that chemo isn't working for the mets in my lymph nodes, so my cancer is now resistant.
I'm not ready to leave my job, as I'm 2/3 of our family income, and I think working is actually keeping me sane, but I am looking into disability coverages for when the time comes, which seems inevitable.
I have a couple of questions some of you savvy ladies might know the answers to.
I've looked at the Social Security benefit calculators to predict what my disability benefit levels would be. Do taxes come out of that amount?
Also, I have long term disability insurance through my employer that covers a pretty small percentage of my current salary. If I do have to go on disability, do taxes come out of that payment?
Thanks for any help you can give me here.
Love and prayers for all of you,
Elizabeth ------------- Dx 05/06 Stage IIIC Local Recurrence 01/07 Mets in opposite side axilla nodes 12/07 Mets to mediastinal nodes confirmed 11/08 NED March 2009-March 2010 Brain met March 2010. |
Posted By: sunbearz
Date Posted: Jan 30 2008 at 10:51am
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Elizabeth, I have the same questions, Maybe one of these ladies can pave the way .I have the info to call and find out. Im sure someone has the pitfalls and what to look out for.
Its a big move. ------------- Dx 1998 mast.Bone mets 2003 ac/xeloda,zometa,taxotere,,doxcil,rads to hip triple neg brca-gemsar Abraxine 2008 -gemsar/taxol combo Taxotere ,Ixempra,liver, lung Mets Testosterone |
Posted By: shellieh51
Date Posted: Jan 30 2008 at 4:05pm
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I've been told that if the employer pays the premium for the disability insurance that taxes are withheld. I too am in this spot and am trying desperately to find an attorney to speak with. My HR department hasn't been as responsive as I would like and my doctor says that everything needs to be in writing with which I agree. I have a friend that did social security disability Stage II BC so I can ask her about that benefit.
I received the results of my cognitive testing today. Since none had been done before, they had to use female my age as the control group. I actually faired better than average for memory but they are requesting that I take some time off and shorten my days to 24 hours per week. I am ready to do so. I am also ready to take the plunge for a parotidectomy and have the pre-op appointment scheduled for 3/3 - surgery to follow during mid-March. This way I can get all of my disabilities addressed and heal and hopefully have a nice summer.
Whenever I get responses to my questions, I will post again. Good luck to you. ------------- dx 11/6/2006 1.5cm IDC, Gr3, TN, BRCA-, lump, partial breast rads 1/2007, 4 AC, 12 wkly Taxol. Completed tx 8/2/2007. NED 12/2007. Malignant parotid tumor 4/2008. Clear head 4/09 & bones 11/08 - |
Posted By: sunbearz
Date Posted: Jan 30 2008 at 5:25pm
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My first day off, working 4 days a week.It was good.Working and going through treatments, tests, Drs appts takes time away from work anyway,so It made since just to take a day off a week, and no guilt feelings.
I think I would go insane if I didnt work.As long as I have enough me time and feel well, its ok.
I too want to get everything done before summer to enjoy a vacation.
Need to get a will done, insurance things. Things I was meaning to do ,but couldnt, working fulltime.
Then I can relax and maybe even read a book.
You know, just thinking about making a decision is more stressfull than just doing it.
Ill just get this rad thing done and thats over.Then move on.  ------------- Dx 1998 mast.Bone mets 2003 ac/xeloda,zometa,taxotere,,doxcil,rads to hip triple neg brca-gemsar Abraxine 2008 -gemsar/taxol combo Taxotere ,Ixempra,liver, lung Mets Testosterone |
Posted By: sunbearz
Date Posted: Jan 31 2008 at 5:00pm
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Wow. this must have been a pretty good week for most.People making friends with others. Wanting to see the person they are talking to.Comfort things and what makes you happy.Its nice to talk about the good things, so when things get tough we can remember.
May we all have a little peace and comfort this weekend.The old groundhog comes out or not tomorrow. Superbowl Sun.! Id rather be watching Desperate Housewives.
Stay warm wherever you are.
Jill ------------- Dx 1998 mast.Bone mets 2003 ac/xeloda,zometa,taxotere,,doxcil,rads to hip triple neg brca-gemsar Abraxine 2008 -gemsar/taxol combo Taxotere ,Ixempra,liver, lung Mets Testosterone |
Posted By: trip2
Date Posted: Feb 01 2008 at 4:13am
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Sunbearz, I don't "do" football either so will probably find some sort of rerun or even better a good book to read.
It sounds like you are starting to find a bit of balance in your life. That extra day off will make alot of difference for you.
Have a relaxing week-end, ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Sadie-Rose 2
Date Posted: Feb 01 2008 at 4:13am
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Hi Sungearz,
Hope you get to have a restful and peaceful weekend. The groundhog won't see his shadow in my area. It’s gray and cold. I get to have a slow morning and I am going to savor it. How are you enjoying your new position at work? In hind sight, are you glad you talked to them about reducing you work hours? How are you feeling physically? I just think of you often and send you positive energy for healing. Warmly, Sadie |
Posted By: Jessie
Date Posted: Feb 01 2008 at 10:58am
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Elizabeth and Jill and All,
As luck would have it, I'm coming OFF my disability benefits just as you are beginning to use yours. It's a wonderful thing to have !
My short term disability kicked in when I'd exhausted my sick leave and continued for 3 months. This is an elected benefit which had been deducted from my salary so it wasn't taxable with I received it. (If YOU pay for it, it's NOT taxable.)
The long term disability started at the end of the 3 months. When I returned to work parttime, I received a prorated disability payment each month. Getting a partial disability payment seemed like an "I'm here if you fall down again" assurance, so it gave me a feeling of security. This is a benefit paid for by my company so it IS taxable income
 --- just received the W2 for that money yesterday. (COMPANY pays, it IS taxable.) Big decision on my part ! I'm going back to my 40 hr/week schedule ! When I recovered from my last surgery, my doctors had been kind enough to limit my work to 32 until I felt secure enough to resume 40. It's a strangly exciting milestone --- like "flying solo" again, taking off the "training wheels", trusting that I'm strong enough again to handle a full time job !!
Handling the whole work issue while dealing with hard illnesses is a problem I rarely hear or read discussed, yet it's something that most of us face. The world seems to assume that if you're dealing with cancer or other serious illness, work is not an issue, plenty of time for being extra good to yourself. Wouldn't it be great if there were a pill to resolve the money/work aspects of this experience !
Take care of yourselves,
Jessie ------------- IDC,Stage I,Grade 3,dx 4/06 dbl mast 5/06, systemic MRSA post surgery septic shock, heart attack triple bypass 1/07 no chemo due to infections and heart issues so far NED! |
Posted By: shellieh51
Date Posted: Feb 01 2008 at 4:22pm
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Thanks for the input Jessie. I hope to meet with an attorney next week just to be safe before I speak with my employer about leave/disability. I just need to heal and it isn't happening with my work environment.
Take care. ------------- dx 11/6/2006 1.5cm IDC, Gr3, TN, BRCA-, lump, partial breast rads 1/2007, 4 AC, 12 wkly Taxol. Completed tx 8/2/2007. NED 12/2007. Malignant parotid tumor 4/2008. Clear head 4/09 & bones 11/08 - |
Posted By: sunbearz
Date Posted: Feb 01 2008 at 5:44pm
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Well, the new position is a little boring ,but Im in my own world with no stress and that was my purpose.Almost brain dead feeling.I know its where I need to be right now-not where I was 2 wks ago.Guess I need to remember how it took all of you and my family to dig me out of that hole.Work is a good distraction.
I am seeing an attorney next week to discuss a will and disability. I dont have it at work so have to go Govt wise.
I dont need it now, who knows 6 months from now.It would be awful to start some treatment and then all of a sudden couldnt work.
As the Girl Scouts say "Be Prepared".
Im doing fine and feel good.Have to mow the grass tomorrow-yes in FL were still mowing.The flowers and trees are blossoming.Too cold to go to the beach 56 degrees tonite 74 tomorrow.I know, poor me. But thats cold here.
Im all ready for Mon rads.I will bless you all at Church on Sun.This should be interesting going to a Catholic Church for the first time.Need to meet up with that Saint Blaise.Im sure Ill have a funny story to tell.
 Jill
------------- Dx 1998 mast.Bone mets 2003 ac/xeloda,zometa,taxotere,,doxcil,rads to hip triple neg brca-gemsar Abraxine 2008 -gemsar/taxol combo Taxotere ,Ixempra,liver, lung Mets Testosterone |
Posted By: Sadie-Rose 2
Date Posted: Feb 02 2008 at 5:13am
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Good Morning Sunbearx,
Hope you slept well last night. It will be interesting hearing about your visit to the Chatholic church. We know that when people pray for you or send you positive energy it reaches you. It sounds wonderful to have grass to mow and flowers. Where I live we are in the rainy season, but spring will burst with color. Sending you positive thoughts~~~~~~~~ Warmily, Sadie |
Posted By: cg---
Date Posted: Feb 02 2008 at 5:43am
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Dear Jill,
Just remember not to sit too close to the front....so you can watch what everyone is doing!
One Sunday, my 3-year-old son (using his church whisper - 3 octaves lower than playground voice), asked if he could change religions? I made the mistake of asking why in the middle of mass....and he replied "My knees hurt...I want a religion with no kneeling". Naturally, everyone around us heard and started laughing!
Connie cg---
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Posted By: sunbearz
Date Posted: Feb 02 2008 at 6:16pm
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Thanks Sadie, Too funny cq,
Lets see if I got. Sit in back row, dont kneel, might not be able to get up.
Dont talk too loud.Im just going to soak it all in and hope my family does also. Feel the presence of God and bless you all . Thats good enough for me.Im taking all of you with me and to the beach after.Since that ole groundhog showed its face.
Warm wishes
Jill ------------- Dx 1998 mast.Bone mets 2003 ac/xeloda,zometa,taxotere,,doxcil,rads to hip triple neg brca-gemsar Abraxine 2008 -gemsar/taxol combo Taxotere ,Ixempra,liver, lung Mets Testosterone |
Posted By: sunbearz
Date Posted: Feb 03 2008 at 7:31pm
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Ok Ladies you are all Blessed and prayed for. I forgot myself.The Catholic church was great.Friendly people.I was blessed by Saint Blaise-the throat saint.Tomorrow is rad number 1.I sure hope they know what their doing.
After number one is over ill feel better.I just have to remember its all for the cure and 10 years is hope for all . Gotta go for 5 more.
 Jill------------- Dx 1998 mast.Bone mets 2003 ac/xeloda,zometa,taxotere,,doxcil,rads to hip triple neg brca-gemsar Abraxine 2008 -gemsar/taxol combo Taxotere ,Ixempra,liver, lung Mets Testosterone |
Posted By: Sadie
Date Posted: Feb 03 2008 at 7:46pm
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Hi Sunbearz,
I'm sure you got blessed too! I am glad you felt received at the church. There was a lot of positive energy in one room for you.
How many radiation treatments do you have to do? We'll all journey with you.
Hope you have a restful evening.
Warmly, PS Did you catch the Freudian slip in your post?
Sadie
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Posted By: sunbearz
Date Posted: Feb 03 2008 at 8:03pm
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Yes Sadie, I caught the slip.
4 weeks -not too long as it is a delicate area.
Thanks for being there with me. ------------- Dx 1998 mast.Bone mets 2003 ac/xeloda,zometa,taxotere,,doxcil,rads to hip triple neg brca-gemsar Abraxine 2008 -gemsar/taxol combo Taxotere ,Ixempra,liver, lung Mets Testosterone |
Posted By: trip2
Date Posted: Feb 04 2008 at 4:13am
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Good morning Jill,
We will be with you today. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: sunbearz
Date Posted: Feb 04 2008 at 2:33pm
 Hey Trip, Thanks. Went through rad #1.Thinking This big machine is going to make me better,Do they have the right angles,Is the tech paying attention as it was 5.00.I was consoling a lady who this was her first time, saying this is a piece of cake, you wont feel a thing. She came out saying "thanks youre right".
I drove home and a song came on the radio,SEALS, Kiss from a rose, and had tears in my eyes.I was thinking about being a kid again.
Dont know what Im feeling, happy there is something for me and also feeling what this does to my family.I can take it, but how do they hold it together seeing me go through this again.
Jill ------------- Dx 1998 mast.Bone mets 2003 ac/xeloda,zometa,taxotere,,doxcil,rads to hip triple neg brca-gemsar Abraxine 2008 -gemsar/taxol combo Taxotere ,Ixempra,liver, lung Mets Testosterone |
Posted By: trip2
Date Posted: Feb 05 2008 at 7:14am
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Jill,
Being the woman we are always more worried about our family than ourselves. It's ok sweetie, you are in one of those times which I cannot fully understand but talk to us and we'll be here for you. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Ronda
Date Posted: Feb 05 2008 at 8:39am
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Jill,
I have always viewed my family as fans while I'm in the game fighting the good fight. They don't wan't to see us hurt, they want to see us win....problem is this isn't a game anyone wanted to go to and we're fighting frickin' lions!!! Good thing they don't have Saints!
Your spirit will carry you through!
Ronda
------------- DX 3/07 IDC Trip neg, stage 2b, SN biopsy 3 node neg. No vascular invasion, Mast 4/07 AC+T DD Finshed 8/07 BRCA 1, Proph Mast 10/07. Reconst & Prophy Hyst. 10/08 |
Posted By: sunbearz
Date Posted: Feb 05 2008 at 5:33pm
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So true ronda,I think I convinced my family to please go on with your lives so I know what normal is and can follow.I know what my life is,help me to remember what I used to be like. Just as I go to work to be distracted, I want to come home to the same.
Caring and concern is good and the special things my family does for me.
But for me to be ok, they have to be ok, otherwise Iwill focus on them and wont worry about me.
They are my cheerleaders
. I think its harder on those we love, than us. We know what we have to do. They dont. jill ------------- Dx 1998 mast.Bone mets 2003 ac/xeloda,zometa,taxotere,,doxcil,rads to hip triple neg brca-gemsar Abraxine 2008 -gemsar/taxol combo Taxotere ,Ixempra,liver, lung Mets Testosterone |
Posted By: sunbearz
Date Posted: Feb 07 2008 at 6:11pm
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Didnt see this coming, but things are looking up. 1st week of radiation, throat is. feeling better,even though the Dr said it could get worse before its over.Tumor marker is going down slowly. Feel great.
Want to get back on the Doxcil as it looks like my cancer hates that drug.
Yea!Just what I wanted to see for others and myself.A Chemo with no side effects.
Keep the Faith ladies, I am
jill ------------- Dx 1998 mast.Bone mets 2003 ac/xeloda,zometa,taxotere,,doxcil,rads to hip triple neg brca-gemsar Abraxine 2008 -gemsar/taxol combo Taxotere ,Ixempra,liver, lung Mets Testosterone |
Posted By: Sadie
Date Posted: Feb 08 2008 at 1:23am
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Jill,
I am so glad your throat is feeling better. Doxcil sounds like the drug of choice for you. How are you feeling energy wise?
Hope you have a lovely weekend.
Warmly.
Saie
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Posted By: trip2
Date Posted: Feb 08 2008 at 5:02am
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Jill I'm so very glad to hear your throat is feeling better.
I meant to tell you my middle name is Jill, I love that name, wanted to switch it when I was little but mother wouldn't let me.
------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: sunbearz
Date Posted: Feb 08 2008 at 3:12pm
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Im doing so much better,Energy wise Im fine .With one day off its like freedom, The rads make me sleepy right after, but tonight being Fri, I feel sooo good.Im really optomistic about the next three weeks.
That big ole machine over my face freaks me out shooting beams to my throat.But 2 minutes later Im outta there.
Going out with my daughter to look at houses.She wants to buy one, so its a mother and Daughter day. Unfortunately Sunny Fl isnt so sunny tomorrow.Which reminds me of all the people whose lives were uprooted by the tornados.My heart and prayers go out to them as I sit in my safe home.
Hey Pam, good thing you werent names Jill, then you would be Jillybean, jillybear,jilda,and the old "Wheres Jack"?Well my answer is I took Jack up the hill, cracked his head open and wrapped it with brown paper ,and as far as I know Hes still up
there.As you can see Im getting my humor back. So nice to laugh. ------------- Dx 1998 mast.Bone mets 2003 ac/xeloda,zometa,taxotere,,doxcil,rads to hip triple neg brca-gemsar Abraxine 2008 -gemsar/taxol combo Taxotere ,Ixempra,liver, lung Mets Testosterone |
Posted By: Barb T.
Date Posted: Feb 12 2008 at 1:11pm
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Gosh, the discussion re: disability has been very informative for
me. I'm currently receiving disability, have been for just over a
year. I rec'd it very quickly after signing up for it. I
was diagnosed with Stage IV in 2/06. Tried to keep working but
was unable because of all the side affects from the various
treatments. However, I have always felt guilty about taking
it. I've never 'taken' anything in my life. Always gave
110% at work. Reading your responses makes me feel so much
better. I do have a question. When I signed up for SS disability, I was also receiving disbility from my State government job. I thought that was running out. However, it keeps going. Does anyone know if this is going to cause me problems? I still haven't figured out why I continue to receive from the State. I didn't work there that long. But, when I send in the forms every 3 mos. as instructed, they keep approving. It's all been very helpful since I have to pay a lot of medical expenses out of pocket. However, beginning to worry there could be problems down the road. That's the last thing I need in my life. Thanks! Barb T. |
Posted By: trip2
Date Posted: Feb 13 2008 at 4:11am
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Jill this is such good news to hear you are continuing to feel better.
The mother-daughter day to look at houses sounds fun. Did she find something?
I had a "do our nails" day last week with my 21 yr old and enjoyed
the spontaniety of just jumping up and going.
I've never hadmy nails done before, that was fun.
Oh dear I never thought about what they could do with the name Jill. Think I'd take Jillybean over Pammie!
Thru high school everyone called me by my last name so I got over it. It is fantastic to see your sense of humor back, hugs and big wishes for smooth sailing thru the rest of those rads, ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Cookie
Date Posted: Feb 13 2008 at 6:24am
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Here is a great site I came across. Go there and put in your profile and Johns Hopkins will give you statics, advise, answer your questions. Everything is geared for you personally. Pass this site on to everyone you know that has bc.
https://www.cancerfacts.com/Secure/InterfaceSecure.asp?CB=10 - https://www.cancerfacts.com/Secure/InterfaceSecure.asp?CB=10
Cookie |
Posted By: shellieh51
Date Posted: Feb 13 2008 at 2:08pm
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Thanks Cookie - I will definitely log in to this site. ------------- dx 11/6/2006 1.5cm IDC, Gr3, TN, BRCA-, lump, partial breast rads 1/2007, 4 AC, 12 wkly Taxol. Completed tx 8/2/2007. NED 12/2007. Malignant parotid tumor 4/2008. Clear head 4/09 & bones 11/08 - |
Posted By: trip2
Date Posted: Feb 14 2008 at 4:26am
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Thank you Cookie. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Galina2
Date Posted: Feb 14 2008 at 8:35am
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Hi, I also wanted to WORK, WORK, WORK!!! weeks after my double mast, I called my boss to come back! I was still SO sore and week! They started telling me how much work they have for me to do! My nurse warned me I would not get any insurance, and I would have to work for 4 months straight to be eligible again! During chemo something is ALWAYS happaning: if I am not stomack sick, I am in TERRIBLE pain, or I cannot walk because my feet are sore, my fingers are so sore I cannot even dress myself, this chemo my cells were non existent, I got so week I couldn't even move my arms; now I got sick and am an antibiotics! I admire everybody who can work! Amazing! I do not get that much in insurance, but I am glad I chose to take care of myself. I have worked hard my whole life, have two beautifull children and finally feel like work is not my whole life! ------------- Believing is 50%!Dx 7/10/07, Lumpectomy 8/24/07, double mast/no recont. 10/01/07, IDC, 3 cm, Grade 3, 0/4 nodes, Stage IIA, ER-/PR- HER2- Age 48, chemo 11/23/07 lung spots 3/08 |