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Radiation recovery

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Comments

  • macatacmv
    macatacmv Member Posts: 1,200
    edited June 2012

    Hello Ladies,

    I am still wearing soft stretchy bras, too. I get a sport bra with a front hook because of my shoulder problems, so much easier to put on. The last time I was at PT the tech told me that compression is key. She was going to look to see what possibilities there might be that would not be too expensive. I'll let ya know if she finds something worthwhile. She also suggested I order a shoulder elastagel ice sleeve. It drapes over my shoulder but also covers the one breast and has  a sleeve for my upper arm. I use it at least once a day after exercises. It helps with the shoulder but also with those shooting pains from rads.

    Sew, good luck with class tomorrow. I am going back for the next one in the am also. will let you know how it goes.

    truebff, might be worth a summer trip to MI for some pampering. I find this trying to feel better is really hard work.

    I had another chest xray today. Noone can figure out why my  lungs are so imflamed.  We are just treating the sympthoms at this point. I am waiting on a pulomary specilist appt in 2 weeks.

    Janis glad you got thru the mammo and got the all clear for now!!!!!

    Sab, here's to reclaiming our houses and our lives!!!!!! 

  • SAB
    SAB Member Posts: 1,121
    edited June 2012

    Scottie, I haven't worn the Ah Bra...but it looks very similar to the Genie.  I did notice it was twice as expensive, but I can't figure out why.  I am not what you would call a "precision laundress" and I am pretty rough on clothes so I don't like to spend too much on undergarments that will be thrown in the general laundry. King, I'll keep my eyes open at Target.  I just never want to go back to the nasty old underwire!

    If all goes well I will finish that cottage painting job today.  I don't know what I was thinking! You know, when you make a throw-away comment like "Oh, it's such a small cottage I'll just paint it myself."   Stupid, stupid, stupid!  I pretty much just have the bathroom left--very tight in there.  Sigh. 

  • SAB
    SAB Member Posts: 1,121
    edited June 2012

    Macatacmv, just saw your post--it was on the "next page."  I'm sorry to hear about your lungs.  It's so frustrating to have to wait weeks for a specialist. I assume that nobody will say it is related to the radiation?

  • macatacmv
    macatacmv Member Posts: 1,200
    edited June 2012

    SAB, it is very frustrating! RO says no way rads were related, even tho they watched me struggle so hard thru rads, yet on the CTscan order rad induced asthma was listed. The good news is that the scans are clear, but there is definitely something wrong.  I was telling my PCP yesterday, I go to all these different docs and they all just want to discuss their particular area. RO, skin issues, MO BC issues, , BS incisions etc.... He squints his eyes at me and says to call the top doc in Boston again and take more of these pills. The guy is trying, and probably frustrated, too. I am so glad to have this place to know that I am not alone. And even tho it feels like longer than I can handle I will get through this. I count my blessings everyday!

    I made it thro another water aerobics class this morning. Afterwards I sit on the bleachers and catch my breath and wait for my energy level to come back up. While there I had a lovely conversation with a friend of my DD, who works at the Y. Life has slowed down, but I have the time to really connect with people. And that is really what life is all about. (picture light bulb going off above my head) 

  • Scottiee1
    Scottiee1 Member Posts: 1,790
    edited June 2012

    Thanks Sab. I also am very rough on my clothes so I will see about getting the genie. I'm so impressed re your painting of the cottage, gives me hope that I might actually be able

    to do some housecleaning one day, just not today.

  • kingjr66
    kingjr66 Member Posts: 406
    edited June 2012

    ice cream man, ice cream man......... hear he comes, I hear the bells and theme music from the movie Sting........since we can't mention, sssshhhhh cake, I'm running out to catch him.......anyone want some?...........and just in time for dinner..........way is that?.......can't they come around after dinner.

    vanilla

    or chocolate

  • schatzi14
    schatzi14 Member Posts: 906
    edited June 2012

    maca...I also had lung issues...extremely short of breath...this was after my second DD/AC...and much worse after the 3rd....the MO stopped the 4th treatment and I went straight to 12/Taxol. The hematologist said it was Pulmonary Embolism related to the chemo. I gave myself Fragmin shots (blood thinner) for 6 months then he said I was done with it. I noticed the shortness of breath improved almost immediately when I started the shots. I am fine now except for being out of shape! I still huff and puff when I exert myself (which isn't often).

  • MostlySew
    MostlySew Member Posts: 1,311
    edited June 2012

    King....man you're irrepressible! I haven't thought of the ice cream man in years! Now, cheesecake, that's a different thing altogether....Janis, made another one yet?



    Macatac, I made it thru my water aerobics class...woohoo....even came home and spent 3 hours painting molding for my new studio. Paying for it right now as my feet are dead tired, but I feel pretty good.



    On the subject of lungs, several women on our rads board got costcochrondritus during rads, and Janis and I got a different version which involved inflammation of the nerve endings surrounding the lungs. The Dr.s don't think it's related to rads, but you can't fool me! I was fine after my attach and being certain to get enough rest and relaxation etc. etc. I believe Janis was fine after her two episodes and everyone else ended



    Welcome to all the other new gals, and for those just starting rads, remember to allow your body to catch up with itself during the process. That may mean just sitting down with your feet up for 10minutes as needed. You'll be thru it sooner than you think. And as someone said, keep doing a bit of exercising as you can because that will help. And remember to eat lots and lots of protein. It really does help.

  • fredntan
    fredntan Member Posts: 237
    edited June 2012

    Macatacmy, I have also had extreme SOB. It started after i tried to resume exercizing. Went walking/running for three days straight. Forced myself. I dont think my lungs where up to it. I have rested over a week, been to ER to R/O pulm emboli, and dr after dr. They all say its not related to them. If you think about it almost half of our lung field has been stressed out during rads. Not to mention effects of chemo.



    Talked to another survivor. She had same symptoms. Took her many months to not feel like crap. Iam going to take it easy, just mild walking for few months. I still have sob, but not as bad as before.

  • macatacmv
    macatacmv Member Posts: 1,200
    edited June 2012

    Thanks everyone for responding about the lung issues. I don't feel so alone. I was really starting to feel crazy.

     I have never had lung issues before, but I have been in acute asthma attack mode for months. It started the first week of rads and we can't get it under control with meds. I am doing PT/OT, a half hour walk every day, and now have started water aerobics. I have a very deep wheezing cough, that everyone comments about when I am out in public. Very irritating. I have to have an abuteral inhaler next to me at all times.  I am just trying to give my body the time to recover. 

    Anyway I am glad to have you ladies, to get through this with.  

    Now I'm thinking of ice cream! Is there a trip to dairy queen in my future? Hmmmmm? 

  • Momine
    Momine Member Posts: 2,845
    edited June 2012

    Maca, I am glad of the discussion too, since my lungs have been acting up lately.



    For the asthma, my daughter had asthma all her childhood and felt better if she ate raw veggies and artichokes (cooked). It is no cure, but it may help a little in easing the situation. Spinach and lamb and goat meat are also supposed to be good.

  • macatacmv
    macatacmv Member Posts: 1,200
    edited June 2012

    yum. spinach and ice cream!

  • SAB
    SAB Member Posts: 1,121
    edited June 2012

    Noooooooo! Walk right past that ice cream shop...there's probably a frozen yogurt shop on the next block!

     

  • schatzi14
    schatzi14 Member Posts: 906
    edited June 2012

    wow those look sooooooo good

  • SAB
    SAB Member Posts: 1,121
    edited June 2012

    They are yummy.  I treated myself to frozen yogurt yesterday after finishing that paint job from h*ll. Sugar free vanilla, a touch of chocolate for flavor and smidge of pistachio because I like green Wink 5 ounces, about 125 calories, low fat...OK, I'll stop.

    At home today waiting for the water truck--our well went out again.  Then off to Reno for a swim meet with no more home repair/cleaning/laundry/job hunting for a whole weekend. Maybe even a nice hike. Ahhhhhh. Have a lovely weekend, and make sure to do something nice for yourself!

  • schatzi14
    schatzi14 Member Posts: 906
    edited June 2012

    OK GREAT! Now I am craving something with fruit and no wheels to go and get anything.

    BUMMER!

    Have fun and enjoy your weekend :D

  • MostlySew
    MostlySew Member Posts: 1,311
    edited June 2012

    Sab, does that mean when I finish up painting this new room I get to go to town and get frozen yogurt? Sounds wonderful. Or, maybe a fruit smoothie......ok, no reason to finish painting, think I'll just mosey on up to town.



    Fredntan, Momine and Macatac, I'm so sorry you are all suffering the lung issues but it does sound like they're getting better. Mac, your exercise routine is excellent for your health, but you're still just a bit out of rads, so be sure to do a more easy water aerobics class rather than totally strenuous as they can be. It might be your lungs trying to give you warning to take it a bit slower.....don't quit, just slower. Just a thought.



    Says me, who has painted for all of an hour and had to take a break.....beautiful day for it though as we've got a gentle breeze and 80 degree weather.....yummmmm, that fruit smoothie or jamba juice is sure calling me.......:D

  • kingjr66
    kingjr66 Member Posts: 406
    edited June 2012

    MostlySew - I know all too well about costochondritis.  I suffer from this condition due to fibromyalgia.  It's an inflamation of the breastbone/sternum.  Yes, I can see how rads would flare up this condition.  I did have a flare up during my rads treatment.  Hurts like hell.

  • kingjr66
    kingjr66 Member Posts: 406
    edited June 2012

    almost forget......did someone say frozen yogurt........

  • justmejanis
    justmejanis Member Posts: 1,474
    edited June 2012

    Welcome to all the newbies.  Whew I haven't posted in a bit and really had to read a lot to catch up.  It is nice to see so many new people participating.  I'll enjoy getting to know you all....if I can just keep up! :)

    Oh yes good old Costochondritis.  Sew, you have an excellent memory!  My first flare up sent me to the ER.  The second one happened ten days later and since I knew what it was, I just took pain meds and rested.  Nasty stuff.  I think to be a Radiation Oncologist it is mandatory that your resume reads "DENIAL of side effects".....or something like that.  My RO acted like he had never heard of such a thing, so of course it was not from rads.  Give me a break.  Later when I developed lymphedema he denied that as well.  My BS told me I had LE, but despite two or three visits to the RO he still said I didn't have it.  When I finally went for LE therapy my therapist told me hands down I had it.  The massage techniques helped so much thank goodness.

    I am not even going to talk about dieting.  SAB....wow, you are really doing great and you eat so healthy.  I just am not there yet and eating poorly.  Way too much fat and sugar.  I have a hard time saying no!  By the way Sue, I made a coconut cream pie the other day.  The scratch kind all the way, homemade custard and real whipped cream.  I do not like Cool whip....LOL.  It was divine and our friends were thrilled.  I made a big pie, in a quiche dish so we had plenty.  I need to stay out of the kitchen.  The frozen yogurt looks awfully good though.  Yum!

    I am really now starting to have some issues with my joints.  My neck is a nightmare as always.  Today though one hip and both knees are miserable.  Along with my neck and shoulder.  I had to lie down this afternoon just because it hurt so much.  This morning I woke up really early (3:30ish) freezing cold.  Freezing because I was drenched.  Night sweats, worse than ever.  I got up and changed into fresh jammies......switched out my pillow and went back to sleep.  I woke up a couple hours later same thing, so I gave up and got up.  Later I got the bed all stripped including the mattress pad.  Everything is out on the clothesline drying.  I hope for a much drier night tonight.  That was awful.  Arimidex...I love you....not really.  Just 4.5 years left to go.  My glass is still half full, but I sure wouldn't mind catching a break once in awhile.

    King Jr......loves the ice cream cones.  You forgot something.......

  • macatacmv
    macatacmv Member Posts: 1,200
    edited June 2012

    Hello All, No trip to the ice cream or frozen yougurt store for me, yet.

    I got a call from the pulomary specialists office today at 3:30 and they have a cancellation at 9:30 tomorrrow. So off I go to the big city. I have to get the first boat at 6 (45 minute boat ride) and then an hour and a half drive. I am a little freaked out since it was such a turn around after having the chest xray on Tuesday. But hopefully i will get some answers instead of just meds thrown at me. My DS (26) is going to drive and go into the appt with me. Because my brain is mush!!

  • schatzi14
    schatzi14 Member Posts: 906
    edited June 2012

    maca...I  hope you get some positive news tomorrow.....great that your DS is driving you and will be a witness to all the stuff you won't remember when you get home.

  • MostlySew
    MostlySew Member Posts: 1,311
    edited June 2012

    That's good news Macatac, enjoy the boat ride and bring a pencil and paper for your son....for all the notes, NOT to draw pictures on!

  • Elizabeth1889
    Elizabeth1889 Member Posts: 509
    edited June 2012

    macatacmv, Wishing you good luck with your appointment today. Glad your DS is going with you.

  • kingjr66
    kingjr66 Member Posts: 406
    edited June 2012

    janis - this one is my favorite when at the Jersey Shore.......

    but this looks yummy too...........

    especially since it has alcohol in it..........

  • Lacey12
    Lacey12 Member Posts: 2,895
    edited June 2012

    Popping in to ask if any of you have heard this.....Just read a piece about cruciferous vegetables containing goitrogens, compounds that slow the absorbtion of iodine and thus impact thyroid functioning. My sister sent me this info since I have struggled with terrible fatigue since ending radiation and starting tamoxifen. Has anyone heard of this? I'm disappointed since kale is my new best friend and I eat raw kale salads a lot, thinking I am being so healthy.....and trying to get my energy back. The article said these veggies need to be cooked to avoid the goitrogens effect.



    Also would love to hear how the carrot cake recipe made with stevia works out....



    Maca, hope your trip to the mainland was productive for you and you get relief from the asthma symptoms.



    I am now five months out of rads and have not done a good job of taking care of myself, life schedule-wise. I worked my very demanding full-time job through two surgeries (two days off for each), and arranged my rads for end of the day so my work schedule was not impacted at all. It wasn't. My clients never even knew anything was going on with my health (as it should be). I took care of everything that needed doing....if I wasn't there to do it, it waited for my return or clients suffered.....thus dragged myself in on days I should have stayed home to rest......and now I see how I have paid the personal price for it. I have been exhausted for months, and finally realized that I will never really feel better until I can have the time I need to get rest, exercise, plan totally healthy meals, etc. So, sad as it is for me (i love my job), I am leaving my full-time position to work on recovering my health.....I would love everyone's ideas for what has worked well on your paths to the new normal. Thanks so much!

  • macatacmv
    macatacmv Member Posts: 1,200
    edited June 2012

    Lacey,

    I love kale too, but usually eat it cooked, but know nothing about goitrogens. Someone more informed will come along soon.

    I am also not a font of info about how to get to a new normal since I am struggling myself. But I will say that I had no idea what an impact this would make on my life when I started this journey. My BS told me it would just take days to recover from the surgeries and life would go on. The RO told me that the symptom I had couldn't have to do with the rads so I felt crazy. I also tried to work through a demanding physical job and just made myself sicker. I went back to work a week after LX and caught a cold and I have not stopped coughing since. I own a business, so it was a very hard decision to close the shop to just take care of myself. My father died last year and I have inherited some money, so I am not worried financially, but emotionally I am in the pits.

    Anyway,  the pulmonary speclialsit said yesterday that he believes that the lungs are ok. They are working. It is the bronchial tubes that the protective lining has been stripped away and they are not regenerating. So therefore the air is running over the nerve endings everytime I breathe. He does not know why they were stripped away or why they are not healing. He ran lots of blood work to test for allergens. He prescribed another med for cough suppression and told me this would take time to heal. I am also going to be getting a nebulizer to use for 6 weeks. Hopefully we will be able to taper down on the prednesone. No magic cure. 

    So my full time job now is to take care of myself and help my body to heal. Some things that have really helped. I started mental health therapy, I got OT/PT for my shoulder and irradiated skin, I go to a chiropractor, and an acupuncturist and am looking for a massage therapist. I try to find at least one joyful thing to enjoy everyday. I take a walk everyday with my dog. I go to a BC support group once a month. I have just started going to a water aerobics class at the Y. I feed the birds and can watch them for hours.  

    I try to give myself a break because I am on so many meds, that I don't feel like myself. And I come on here and converse with you wonderful ladies. To remind myself that I am not alone and that this too shall pass. 

  • Scottiee1
    Scottiee1 Member Posts: 1,790
    edited June 2012

    Sorry Lacey12 my skin finally broke down after rads OMG went to a clinic and was told on top of everything, I had a FUNGUS so spent the last week dealing with this. Another BC survivor gave me PERMISSION to go to work braless (I'm 65 ..not a pretty sight but oh boob heaven...I may never go back ....put. a flower in my Hair and go around like an old hippy. On a more serious note, if I can muster up the energy to go out and get the ingredients, it will be done within the next few days💪

  • Elizabeth1889
    Elizabeth1889 Member Posts: 509
    edited June 2012

    macatacmv, Wow, you are dealing with so many issues. Please be gentle with yourself. On top of your physical issues, you are dealing with the death of your father. We never really get over the loss of our parents, but it does get easier with time. Sending hugs to you.

  • Lacey12
    Lacey12 Member Posts: 2,895
    edited June 2012

    Scottiee1.....absolutely NO RUSH on that cake.....just take care of yourself....especially before the warm weather makes your condition feel even more challenging!

    ((((HUGS)))) for fast healing for you...

    .....and I love the flower in the hair idea....Woodstock here you come! :)

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