I don't want to have any regrets.

Options
cheers247
cheers247 Member Posts: 270
edited June 2014 in IBC (Inflammatory Breast Cancer)

I've been thinking about the future a lot lately.  I was diagnosed with IBC in April, 2009, and I have been on (unpaid) medical leave from work since then.  Work was a really big part of my life, and I enjoyed it so much.  I am an RN.  I am hoping to go back to work in March, but I'm not sure that's going to happen.  I have chemo-induced periferal neuropathy (can't feel my feet) I fall occasionally, and have shut my foot in the car door a few times... kinda funny to say it, but it's not really funny.   I have "chemo brain" I scare myself with some of the things I say, think and do.  I've given myself the wrong pills a couple times, I can't stay focused or multi-task anymore.  These are all things you don't want in your nurse!  My Onc. has told me there will be restrictions on my return, so that I won't be a risk to anyone, or myself, and that makes me feel better.  But my biggest reason for thinking I'm not going back to work is that I have new pains... in the middle of my back and on my hips.  I feel so weak now, worse than I did after chemo (last chemo was in Sept).  Scans are going to be the first week in Feb.  Cancer sucks in so many ways, it's stolen the last year of my life, I'm losing my house, and maybe my job.

I want to do so many things, even if I have progression, I want to see my son graduate from HS, and travel, sit on a white sandy beach and sip an umbrella drink.  I've never had time for fun, I feel like I've barely lived.  I had my son when I was in 10th grade (the best decision I've ever made!!), went straight to college after I graduated, then went straight to work... I have not done anything else.  I want to have fun and see my son have fun too.  If I don't have that chance, that will be my biggest regret.

· Share on FacebookShare on Twitter
«1

Comments

  • dlb823
    dlb823 Member Posts: 9,430
    edited January 2010

    Jessica ~ First, I want to say, kudos to you for keeping your son as a young teenage Mom.  That could not have been easy on any level.  And it sounds like having some fun would be really good medicine for your spirit right now.  Not having regrets is something most people don't really think about with any urgency.  So, in that way, as odd as it may sound, I think bc can be a gift that makes us re-examine how we're spending our time.

    I also wanted to ask you if you've tried anything for the neuropathy.  Many women, including me, have had great results with B6.  And there was a post on the Natural Girls thread just today about another supplement that helps with that --  "... if you develop peripheral neuropathy (pinchy stingy pins and needs - typically hands and feet) - I used 3 TBSP of L-glutamin a day and this stopped it. My ONC's office said there was no medical proof it worked, but it worked for me and many other women, so who cares..."   Just wanted to pass those two suggestions along to you in case you're not already familiar with them, with the hope that one or both of them will work for you.  Feel free to PM me if I can give you any more info' about either one.

    Praying that your upcoming scans will be totally clear ~  Deanna

    · Share on FacebookShare on Twitter
  • diana50
    diana50 Member Posts: 2,134
    edited January 2010

    i think you need to give yourself and your body some time to heal. i took off a year before i returned to work after chemo and rads.  i wanted to be sure i was going to be competent in my job and didn't want to take any chances on chemo brain.  the neuopathy is hard to deal with; i did take neurontin...not sure i spelled that correctly ..but it did help. vitamin D and the B's will also help. this stuff is really hard and it does take its toll. however, i can tell you that time really helps; the farther you get away from treatment seems to help the body. the AI's do cause alot of body pain but for me, i just wanted to make sure i wasn't going to relapse. sorry this is all so hard. have you checked into disability? it isn't a lot but it helps. having cancer usually qualifies you for some kind of disability.

    i just wanted to encourage you. i know it is hard. you are very young and life is ahead of you. your son loves you so much..i am sure ...so hang in there and check out options.

    diana50

    · Share on FacebookShare on Twitter
  • cheers247
    cheers247 Member Posts: 270
    edited January 2010

    Thanks Deanna & Diana!!  I do take Neurontin, vitimins B and D, and L-Glutamine... they have helped, I had "buzzing" in my legs and that has stopped, but my feet still feel like they got novacane.   Oh, I do get disability, it's what we are living on right now... IBC automatically qualifies for it, so it was a really easy process.  The neurological effects of chemo sure are devastating.  I was working on my Masters degree in Nursing before my diagnosis, and have had to stop that too... I'd love to be able to do at least that.  The upcoming scans will give me an idea of what my future looks like.  Thanks so much for your support!  Much Love!  Jessica

    · Share on FacebookShare on Twitter
  • Fidelia
    Fidelia Member Posts: 397
    edited January 2010

    Dear Cheers247 - you are one brave girl! this disease is a b*tch but you will get your life back. I think the advice to give yourself time to heal is very good - I do understand how hard it is to reconcile the need to pay the bills with the need to survive - I hope you have someone/s helping out with lfe's annoying practicalities while you beat this into submission.

    I second the pains thing - AIs can be very hard for some - I get a lot of muscle, tendon and joint paint - intermittently so you are never quite sure what it is - but ever since I have been on Femara - my mobility has suffered and I 'the shuffle' which refers to younger ladies who have all the aches and pains of much much older ladies AND a funny walk caused by stiff muscles....but the drugs work so let the shuffling continue :)

    Good luck with those scans and try to be a bit easy on yourself - you have done so much and just need a bit of a break so you can get back and do so much more - and very lucky to have that son :)

    Fidelia

    · Share on FacebookShare on Twitter
  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2010

    Jessica - you so deserve a tropical vacation!  I know money is tight (it is for us too) but I hope you can plan some kind of trip or celebration soon.  I am so glad that you are getting disability - I am sure it isnt much, but still. 

    Prayers and positive thoughts that your upcoming scans are all clear.

    · Share on FacebookShare on Twitter
  • cheers247
    cheers247 Member Posts: 270
    edited January 2010

    Hi Bonnie, Thanks so much for your support!  Actually It didn't hurt to close my foot in the door... I really can't feel it... it's that bad!  I am afraid I'll do some damage to my feet though, I have to be really careful, looking at my feet when I walk, get in/out of the car and going up/down stairs.  I forget all the time, and fall etc., It's really a bizarre feeling.  I did get a baseline brain MRI at the beginning of my diagnosis, I'll have another one in Feb. with my other scans.  As far as being on the sinking ship... I mean the big boat in this economy, If I don't go back to work in March I'll get forclosed on, my parents have been paying my mortgage for almost a year now, and they just can't do it anymore.   Wow, now that I think about it, a lot is riding on the results of these scans...  I'm glad your chemo-brain has improved!  Much love!  Jessica

    edited for mis-spellings... chemo brain... duh

    · Share on FacebookShare on Twitter
  • lorieg
    lorieg Member Posts: 802
    edited January 2010

    Hi Jessica,

     Unfortunately I can't say I have many words of wisdom for you especially since I am behind you in this process.  I will be keeping you in my prayers for clean scans!  I would expect a lot of your pain is due to the AIs. I have read they can cause a lot of discomfort.  I know it is not the same b/c I was still on chemo, but I was having back pain, such odd pain, that I was absolutely positive was due to bone mets.  The scans turned out clean.  It felt very different than the rest of my chemo-induced pain.  I strongly suspect your hip and back pain is not cancer.  As far as the chemo brain goes, I think that gets better with time.

     Hugs and sorry you are feeling crappy. 

     Lori

    · Share on FacebookShare on Twitter
  • cheers247
    cheers247 Member Posts: 270
    edited January 2010

    Thanks so much Lori, I do think some of the pain is from the Femara, I've had that pain for a while, but the new pains are what's concerning me.  I hope it's all the Femara!! I've been following you too, I hope you are doing well, I pray for you everyday!  Much Love!  Jessica

    · Share on FacebookShare on Twitter
  • cheers247
    cheers247 Member Posts: 270
    edited January 2010

    I went to the oncologist today, he told me to stop the Femara, and in 2 weeks I'll start Arimidex.  I've already tried Aromasin, (caused very high BP's).  And my scan's are moved up to next week.  I'm hoping all the new pains are related to Femara. 

    www.caringbridge.org/visit/jessicam

    · Share on FacebookShare on Twitter
  • jessicav
    jessicav Member Posts: 161
    edited January 2010

    Jessica-

    Do you know that your name means "God's Grace."

     In Alessandro Botticelli’s painting the“Birth of Venus” (1485), the goddess Venus [or Aphrodite as she is known in Greek mythology] emerges from the sea upon a shell in accordance with the myth that explains her birth. Her shell is pushed to the shore from the winds produced by the Zephyr wind-gods amid a shower of roses. As the goddess is about to step on the shore, one of the Nymphs reaches out to cover her with a purple cloak.

    Here Venus is shown as a beautiful and chaste goddess and symbol of the coming spring.

     Jessica-

    Jessica

    · Share on FacebookShare on Twitter
  • cheers247
    cheers247 Member Posts: 270
    edited January 2010

    Thanks Jessica, I didn't know that.  Much love!  Jessica

    · Share on FacebookShare on Twitter
  • lorieg
    lorieg Member Posts: 802
    edited January 2010

    Jessica,

     I hope you get good news with your scans and that you tolerate the new AI better.

    Best of luck, and keep us updated!

     Hugs, Lori

    · Share on FacebookShare on Twitter
  • NYmom60
    NYmom60 Member Posts: 44
    edited January 2010

    Hi Jessica,

    The future is scary and we don't know what it holds so try to have some fun now with your son and, if possible, plan a trip with him.  You have come so far and are a very strong person. I am hoping and praying the pain is due to the medication. Good luck with the scans!

    Hugs,

    Monika 

    · Share on FacebookShare on Twitter
  • cheers247
    cheers247 Member Posts: 270
    edited January 2010

    Thanks Monika!!  I hope your radiation is going ok so far!  My burns are finally on the mend, I still have a few areas that bleed (not pleasant!).  Scans are scheduled for Wed and Thurs next week, results on Fri!  Much Love!  Jessica

    www.caringbridge.org/visit/jessicam

    · Share on FacebookShare on Twitter
  • huntersmom
    huntersmom Member Posts: 28
    edited January 2010

    Jessica,

     I have been thru a lot of the things you have.  My son is 9 and I have always been a career person.  My job made me which now seems kind of crazy.  I also have "chemo brain" and my job required a lot a details - I got really sick of telling my clients I was not sure and would have to check and let them know.  I started my reconstuction in Oct. and decided since I was going to be out on unpaid leave anyway I would try to get disability.  It only took a month and I was awarded.  That is the good part - the bad part is I don't start getting it for 5 mos.  I, like you, don't really know where this is going and decided that life if not about a job for me and I wanted to spend more time with my son.  Financially pretty rough right now but hopefully long term the right decision.  I wish you well with yours.

    · Share on FacebookShare on Twitter
  • Kodapants
    Kodapants Member Posts: 139
    edited January 2010

    Cheers247,  I'm sorry about the neuropathy problems. I too am a RN and I still work and always have. I didn't have a choice as I am the sole bill payer. I am lucky because I do paperwork and have my own little office. I do help the girls on the floor at times. I know I am limited, I hate to admit it and the staff knows. I can't remember more than a few tasks at a time. The craziness at the nurses station can overwhelm me at times. When I leave work I go home and I am in my PJ's and I am worthless. But, on the other hand, I love my work family. I forget I have cancer when I am at work. I will be having reconstruction soon and that would be impossible without my insurance. I'm sorry you are losing your house, I know how expensive it is to live in Seattle. God bless

    · Share on FacebookShare on Twitter
  • cagney
    cagney Member Posts: 14
    edited January 2010

    Hi Cheers247.

    I, too, hope that switching to a different AI will help. I have been on Femara for a year and have had joint pain, long bone pain and headaches from it. Generally a couple of ibuprofen is enough to make me comfortable. I have to take ibuprofen almost daily due to chronic pain I have in my chest and armpit due to rad se. My rad onc does not think the rad pain will ever go away due to the high dosages I had. So, I'm trying meditation, massage, and visual imagery to help the pain. It amazes me how much that helps most days.

    I hope your scans go well with really good results!

    Cagney

    · Share on FacebookShare on Twitter
  • cheers247
    cheers247 Member Posts: 270
    edited January 2010

    So... I had a bone scan on Wed. and the PET/CT on Thurs, went to the Onc's this morning... for now I'm NED!!!  There are a couple spots on my back that need "watching" but are not "active cancer"  So I'm on track to start back to work in March (with some restrictions so it won't be perinatal nursing anymore) but at least I can have a life again, I know the odds are against me, but I'm going to make the best of my NED time and will save up some money so I can take a vacation sometime!!  Thanks so much for all of your support!  Much Love, Jessica

    www.caringbridge.org/visit/jessicam

    · Share on FacebookShare on Twitter
  • Kodapants
    Kodapants Member Posts: 139
    edited January 2010

    I am so glad to here the good news!!! You must be so happy and I am happy for you. When you go back just take it easy....We are here for you. I am fearful every day that I'm losing my pea picking mind.

    Good bless you and your sonTongue out

    · Share on FacebookShare on Twitter
  • lorieg
    lorieg Member Posts: 802
    edited January 2010

    Awesome news, Jessica!!!  Makes my night!  Congrats!  (I love good stories!)

     Lori

    · Share on FacebookShare on Twitter
  • ibcmets
    ibcmets Member Posts: 4,286
    edited January 2010

    I'm in the same boat here with IBC since 6/09.  I was also diagnosed with bone metastasis.  I've had 7 chemos with 1 more to go next week.  I'll then go onto Femara & I have been doing monthly Zometa for the bones which has healed them with no metabolic activity on the scans  12/09.  I did not want to take anything that interfered with my onc's chemo; but I plan on taking subliminal B6 & B12 for some neuropathy I have in my feet & hands.  I'm also planning on taking a cactus juice called Nopalea from the same company I order my B6 & B12 from.  I've read that it helps a lot with inflammation and pain from inflammatory diseases.  My chemo worked great at getting rid of my 3.5 cm tumor & stabilizing the mets, but I have not been able yet to get rid of the redness in the breast which concerns me.  Also the inflammation was coming back a bit 4 weeks after my Dec 2nd chemo.  That's why I decided to do 2 more.

    I'l keep you posted when I'm on hormone therapy and let you know how the nutritional treatment is working.

    Terri

    · Share on FacebookShare on Twitter
  • cheers247
    cheers247 Member Posts: 270
    edited January 2010

    Thanks ladies so much for your wonderful support!  Terri, do keep us posted, I'm really intrested to know how you are doing.  My breast pinkness never completely went away on chemo.  I've tried Aromasin, (caused high bp's) then Femara (too much pain), I'm on an AI break right now, then will try Arimidex.  I also get Herceptin and Zometa.  My radiated skin is finally starting to heal now, and the little hole in my right incision that hadn't healed is finally closing up.  I'm trying to get my strength back and get rid of the Femara pain so I can go back to work on March 1.

    On another note... my 35th birthday is Tuesday 2/2... It is a really special one, I'm so glad to be here!!  Much love!!  Jessica

    www.caringbridge.org/visit/jessicam

    · Share on FacebookShare on Twitter
  • ibcmets
    ibcmets Member Posts: 4,286
    edited January 2010

    Jessica,

    Happy Birthday for Tuesday.  I'll be on my last chemo that day.  Thanks for your reply.  Being positive for all 3 ER/PR & Her2 gives you a lot of options.  It's strange how treatment is different for each one of us.  My onc said due to the metastasis to the bone, I probably won't have surgery or radiation unless it's for severe bone pain.  I'm good with that.  I'll check out your carepages and keep in touch about my treatments after chemo.

    Terri

    · Share on FacebookShare on Twitter
  • cheers247
    cheers247 Member Posts: 270
    edited February 2010

    Thanks Terri!  I'm glad you last chemo is today!!  Will you be getting scans soon?  I'm thinking about you!  Jessica

    · Share on FacebookShare on Twitter
  • cheers247
    cheers247 Member Posts: 270
    edited February 2010

    Thanks so much Bonnie!  You have always been so helpful to me!!  I really appreciate it.  I was wondering if you know/or have heard of IBC patient's suffering from increased anxiety after all this awful treatment, and what helps with the anxiety/fear.  Thanks so much!

    · Share on FacebookShare on Twitter
  • cheers247
    cheers247 Member Posts: 270
    edited February 2010

    Thanks again Bonnie!  I feel like I'm fragile, and scared a lot, it seems weird to me.  I used to be really confident and strong.  Maybe this will pass.  I can't take anything that will make me sleepy because I'm going back to work soon.  I do still have a lot of pain in my hips and back, I have trouble sleeping because of it.  Also, now that I'm healed from the BMX, I have a fold of tissue under my right arm I call it "Flipper" LOL, and a lump of fiberous scar tissue under my left arm, I call it "Boobette" and they are very uncomfortable too.  My PS says they need scar revisions, but I don't have much tissue around them, so it will need to be done if/when I have recon.  I haven't decided yet, but Flipper and Boobette must go!! 

    · Share on FacebookShare on Twitter
  • ibcmets
    ibcmets Member Posts: 4,286
    edited February 2010

    Jessica,

    Thanks.  Done with last chemo.  I nap a little during the day.  Glad to be off the steroids because they kept me up as well.  I do take Melatonin from the drug store.  It help you relax and sleep without making you drowsy in the morning.  My next scans won't be until the end of March or April.  I just got SS disability.  My first check came in today.  Yeah!  Take care and my best to all the IBC patients.

    Terri

    · Share on FacebookShare on Twitter
  • germangal
    germangal Member Posts: 97
    edited February 2010

    Jessica, I had anxiety during and after treatment. I was on Xanax during treatment, and then put onto Effexor to help with hot flashes and continued anxiety. Originally it was 75mg but was just increased to 150mg because we have some family crap that is going on & impacting my "peace of mind."  It helps, as does reiki massages, meditation and guided visualization. You might check your hospital to see if they offer complementary services like these. Ours offers them through their Hope Resource Center, and they are totally free to cancer survivors.

    · Share on FacebookShare on Twitter
  • cheers247
    cheers247 Member Posts: 270
    edited February 2010

    Thanks Kwhite, I'll check with the cancer center and see if they offer these services.  I go for Herceptin on Tuesday so I'll find out then.  Thanks so much!

    · Share on FacebookShare on Twitter
  • germangal
    germangal Member Posts: 97
    edited February 2010

    Jessica, Bonnie is oh so right!  We need to accept that there is someone more powerful than us in Whom we need to trust .... that (S)He will provide us the guidance and wisdom to make the right decisions, that (S)He will guide and educate our caregivers (medical and others), and will give us all that we need to be at peace and to be able to enjoy His/Her gifts.

    I don't attend formal church services, but I do pray silently each morning and last thing at night, for continued serenity. It seems to help.

    Karen

    · Share on FacebookShare on Twitter

Categories