Radiation recovery
Comments
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Geeze, this whole thing in Boston is completely scary. April, sweetie, this is the last thing you need to be dealing with along with your set up for this brand new rads protocol and along with your Dad duties. Hopefully, you'll get thru the set up quickly, and feel good about the procedure and find your daughter "unlocked" and a long-ish weekend ahead of you with clear sailing.
Sab.....sleeves are a perfect solution, but, alas, they've become tight ... ugh... but I'm going to tackle them anyway, lol
Janis, I so agree with you that rads is such a personal journey and there's no telling how our individual bodies will react. And each of us handles what comes our way the best way we possibly can. And we are all really strong women. Hell, we're here aren't we? And fighting, aren't we? We, or at least I, gain an enormous amount of strength from each other. I remember when I was getting those truncal nerve ending attacks during rads, and came here, and there were other gals suffering from the same thing. I felt so relieved. It's not mind over matter.....it's an actual reaction by our bodies. Just like any other allergy, or cold, or anything we "catch". I also remember having the rads induced inflamation of my skin within 3 days of starting rads......wasn't my fault. Wasn't mind over matter. Wasn't me not greasing up, or not greasing enough, or using the wrong cream. Wasn't me making it up. Wasn't me failing to deal with the cancer treatment mentally. It was just my body's reaction to this miserable disease and cure. And, when I come to think of it, the fact that I got BC in the first place was just my body's reaction to the cancer. Millions never get cancer, even though it's in their system too. It's all just a crap shoot. And we all deal as best we can, and support each other the best we can, and, well, just plain cope. And we come here to get reassurance that we're not crazy, or get tips on how to deal better, or get confirmation that yep, it's time to see the Dr, or just plain vent or scream or laugh or cry, because this is the place that feels the most supportive when you've got cancer. And BC sisters understand that, that's why they're so great. And that's why we're here, supporting each other.
Wow.....didn't know I had so much to say....hmmm....think I'll head back to my sewing now......
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Sew I totally agree with your post. All of us have different issues we have to overcome, and we all do it the best that we can. I developed lymphedema and found out here several of the other gals had it too. It is not one of the SE's we choose, like you said, it just happens. The problem with LE is that it stays with you for life. I have been lucky, I know how to do the massage and mine is well controlled right now. It was so nice to find so much loving support here.
ladies let me know what kind of arm exercise helps. Since I broke my arm in December I really have lost much of my muscle tone.
April, still hanging with you Sweets. You know how much we care.......
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I read along & jump in once in awhile. So here goes my jump!
First off April I hope the insanity ends soon & your daughter is well & everyone will be safe!!!!
Kate I am glad you are having a good time & hope the sun comes out for the rest of your visit!
The Thyroid connection....I know there was a thread here somewhere that asked "who had hypothyroidism or thyroid problems before your DX" something like that. I know a LOT of women who chimed in on that thread had "HYPO" even before the BC DX. Also my SIL who was DX with DCIS 6 years ago was DX with hypothyroidism about a year before her BC DX. Last year just 2 weeks before her 5 year cancer free anniversary she was DX with Thyriod cancer. I know of other women who have had BC & are having other thyroid problems/diseases. As for my SIL her treatment was to have her whole thyroid removed. Then she took a radioactive pill & was not to have ANY contact with ANYONE for 7 days. As your urine, sweat, tears, & even oil on your skin is radio active for that week! It was hard as she has 4 children 15 & under. She had RADS with the BC (35 rounds) but each had different SE's. That's as much as I know about it. I am now 8 months out from RADS & still am having tired issues. I had a RO appt. a week ago & he asked if I had had my thyroid checked. I had had the blood test a little over a year ago & all was well. He was ok with that & didn't press anymore on the issue. But I know MANY still have tired issues at a year or so some even longer.
Janis I am so sorry your meds are not working. I have GERD (aka...acid reflux) also & started on Protonix & graduated to Nexium. I can't believe you haven't had a scope at all yet. I had one in the first 6 months of my trouble. That was 7 years ago. Then again 2 years ago when I started having problems swallowing. I had narrowing in my esophagus & had to have it stretched open. Then with RADS day ONE I had nausea big time to the point I had to take Zofran off & on through RADS. It got better but I went to a GI Dr.. She doubled my nexium for 2 months till I finished RADS. Then she scoped me again just after RADS ended as I was having problems swallowing again. I hope you get to the crux of the problem soon! It's a horrible feeling!
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Sew.....VERY VERY WELL SAID!!!!! I agree 100%!!!! I'm the odd ball that gets all the weird stuff or my family!!!!
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julz, thanks for that! Other than the narrowing of your esophagus, did the scope reveal anything? I had this problem before rads, but it is getting so much worse and the high end meds are not helping. I am sure I will have a scope and that it will reveal the issues. Getting old is not for the faint of heart. You are no odd ball julz! You are normal, human and battling a deadly disease. Please know venting here is a good thing. We sure understand.
I made an appointment to see my MO. I have a small but hard lump in my BC breast, really close to the incision. I know this old boob pretty well by now, and this is new. I was going to wait until I see him in June, but basically I knew I better get it checked. Just for my peace of mind. So I go Wednesday afternoon. Likely it is nothing but I will feel better going.
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Hi Julz4 thank you so much for the support. The weather is still bad in Chicago, but I am having a great time.
I am so sorry that you are having trouble with exhaustion and swallowing. I hope this clears up soon. Hegs, Kate
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Julz, I'm so glad you jumped in and shared and encouraged. It's already helped janis I'm sure. Sorry about your thyroid issues. They run in my family also, and I do think rads definitely don't help with them. Unfortunately aging also messes with our thyroid....hmmm, guess I'm happy enough aging come to think of it. I do hope your GERD is under control again, that scope test and stretching sound mighty uncomfortable. Take care, and jump in any time, we're glad to have you....and I totally love your avatar...
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It seems like some of my bc sisters took offense at me saying rads was a breeze for me. I did not say it was just mind over matter. Of course you can be thinking perfectly positively and some illness comes along and mind over matter won't help it. I know everyone is different and the way I handle health issues is different. All I was saying is that I am resilient and fight to keep control, so I won't baby myself, and I push myself not to be exhausted etc. So maybe I felt tired from rads, but I pushed the heck out of myself and was hyper instead. I did not say this is right for everyone, but it is right for me. I truly understand there can be issues with rads, and mind over matter won't stop the pain. So, I am sorry if you took what I said the wrong way. In my case, and my case only( I am not talking about everyone who will do chemo) I plan to go to chemo, run in, speak only to my mo and new internest about my medical issues, and not the nurses, and pound away on my laptop to escape, and come home as quickly as possible. I am hoping that when I get negative thoughts I can replace them with visions of my family and good times I am having with them now. I am praying nausea meds will work for me, and I will fight not to lose too much weight. As for low blood count I will follow my dr's orders exactly. As for exhaustion I hope I can push myself as I did with Rads. Will I be able to do all of the above mentioned???? Of course I don't know, maybe I just will be too sick and forced to give in to cancer, but I hope I can sail through chemo and kick cancer in the butt. Hugs, Kate
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Janis they did the scan before they kept me on meds permanently. It started when I had taken a pill (capsule) & then 2 hours later I had horrible pain in the middle of my chest. I was at the dentist to get work when the pain hit & they wouldn't do the dentle work. I have major heart family history & personal high BP/cholesterol/slight heart murmur problems. She was afraid. So went to Dr. & he had a gastro work up done on me then. He started me on a short course of Nexium as it heals. They think the capsule got stuck & opened in my esophagus which the med could burn. The Nexium worked charms & nothing was seen in the work up. But again about a year later I again had trouble but no pill was swallowed. I had a double scope done then esophagus & colon. They found reddness at the vaulve to the stomach from the esophagus. Colon was clear. Then June 2 years ago I had a MAJOR swallowing problem & it sent me back to the Dr. He sent me back for a double scope. There was a lot of narrowing & a huge amount of polyps in my stomach which are B9 growths that are caused by the Nexium in 30% of longtime users. But that problem probably saved my life as they found a pre cancerous polyp in my colon only 5 years after a clear scope. I now have to go every 5 years for a colonoscopy. As I understand narrowing, scaring, redness & swelling are signs of GERD/Acid reflux. Not all signs have to be present for a DX. Also being over weight which I am puts pressure on the muscles that control the spinster that keeps the acid in your stomach & out of the esophagus. As my friends say I'm a Hot Mess! LOL!!! I really hope they get things fixed for you soon. Most ulcers are caused by the bacteria they are already testing you for & the Nexium as well as other meds don't cure that. They give you an antibiotic for that. Gotta run but I will check in later!
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julz,
I am so sorry that you have to deal with so much. I sure hope things get better for you soon. I had 7 pre cancerous polyps that were benign, when I had my colonoscopy, and i need to have a colonoscopy every 3 year. Next year I will need one again. 1 beniign polyp from what I gather is not too bad, so you should be ok with that. I certainly hope your heart problems and swallowing problem clear up soon. My gosh you have gone through too much. Hugs, Kate
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Kate I liked how you worded it as you didn't step on my toes at least in saying it the way you did! But I did have some a long while back who were not so nicely worded! You didn't hurt me in the least! Each of us has to deal the best way we can or want to! What works for some may not work for others!
Janis my thyroid is fine always has been it's just I am a nurses aide & how things work or corralate with disease gets my "CURIOUS WANT TO KNOW" in gear so I read! As well for my family. My GERD/swallowing is great now! I am good....but watch it closely as if left go you can ultimately get Esophagial Cancer because of GERD if left go & untreated! I have know this for a long time way before BC.
As for my Avitar that is my first Grandson he is 4 3/4 now!!! Here he is just recently with his baby brother.
This pic makes me smile! Just last year my youngest Grandson was born 3 months premature with Congenital Diaphragmatic Hernia given only a >1% chance of surviving! He is believed to be the only surviving preemie CDH infant born at Hershey Medical Center to survive!!! I held him for the first time just before my BC surgery last year! It was quite a year for me & our family! Today is international CDH awareness day!
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The following is way way way off topic, and I appologize.
Kate
I think your chemo plan, for you, is just great. You don't want to talk, don't want to be messed with, and have your own priorities. And so you should. They work for you. I, personally, don't understand them, and probably never will, but then again, that's fine. This is what works for you. What works for me is completely different. I have no business trying to convice you otherwise, and nor would you try to convince me your way is right. You are you, and I am I. And that's how it should be. (that should be a song, I think). Actually, this entire post is one I find distasteful as it is so way off topic. People come here looking for help with their rads not looking for "issues". This on-line posting is actually quite difficult, I find. It's very hard to find the right tone with people. after all, you can't look them in the eye and see if they're understanding you.... you can only hope. I, for one, try very hard to encourage with out comparing, provide info I think someone could use, and attempt to be welcoming to all who are unfortunate enough to have BC. I try hard not to judge when someone is doing something I would do differently. I also won't jump in and encourage an action that I, personally, don' t agree with. And nor would you, I'm sure. And nor would the others here either. so, if my post seemed as though I was condenming you, I didn't mean that at all. You should do what works best for you. I will do the same. We will both try to help others with their issues as we can....... I will occasionally post my opinions, and you will post yours and we will ALL get thru this, as best we can. Does this make any sense?????
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Julz,
I love that picture and how special both these children are. Especially the youngest with his being not only 3 months premature but also the CDH. What a completely stressful time, and then you got BC on top of all that? You, my dear, have a mighty large plate! But, it sounds as if everyone is doing just great, and nothing could be better than that! Thanks for showing us....
Janis, no miracle answers on firming the upper arm yet....but I'm working on it!
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Janis, I just realized you made an appt. for a new lump in your breast. I'm so glad you did. Those things are so scary, but June was a bit far off. Well, gals, looks like we're planning another party. Of course, the MO will have a hard time examining that poor old boob with all of us in the way. Anyway, let us know.....
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Sew thanks so much for the cheerleading! This lump has been here for a few weeks, and it is just different than the scar tissue. It is likely nothing but I will feel better once it is checked.
I think you explained things perfectly. We are all human, all different. The one thing I do know is that nobody here has given into cancer. Having a side effect is certainly not a fault. They happen, and I do believe all of us are warriors in this battle. It is wonderful if you can get through all this with no complications. Some of us had real issues, but we are all still here and still fighting. It takes courage, no doubt. I think we are all normal, just dealing with this disease the best that we can. Personally I find everyone here to have a great positive attitude. We would not be here for sure if we gave in. Everyone here is still fighting this disease. With dignity no less!
julz your grandsons are perfect! I am so glad the little guy beat the odds and is clearly thriving. Thanks for all the information on the reflux. I ate lunch an hour ago, fairly bland, and the heartburn is raging again. It seems to have really gotten much worse over the past few months. I am hopeful if I have the scope I will have some answers.
I'll keep you posted after my appointment Wednesday. Thanks for the support my friends!
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Hi all--I'm following the Boston area news avidly. I lived for 8 formative years in Boston, Somerville, and Watertown, went to grad school at BU, met my husband there, stayed every week for years with a friend in Cambridge when I commuted there from Vermont to work. I still have many friends, relatives, and memories in the area. I saw a map of events in Watertown and there was something that happened within a couple of blocks of each of the apartments I used to live in. I also knew several people working at and running in the marathon, but they were all OK thank goodness. So weird. April, my heart's with you about your daughter. I hope you'll let us all know when you can exhale. So much going on for you! Too much, really, but we don't get to pick.
Julz, your grandsons are gorgeous! It's amazing and wonderful about the little guy.
Janis, that's unsettling about the new lump. Goodness gracious. Fingers crossed that it's fine, probably is. A friend of mine had a hard lump like that near her original tumor site, and it turned out to be "fat necrosis," a very normal kind of lump that popped up rather suddenly.
Kate, I am loving the reports about your trip! Keep them coming! I know I get a lot of emotional mileage out of beautiful memories too. The trip is quick, but the memories will sustain you.
I've just done 20/30! 4 weeks of rads down, 2 to go! So far I'm doing quite well, and I feel very fortunate in that. My skin is a bit pink (and it's certainly a bit pinker the last couple of days), nipple a bit sensitive, some soreness off and on, but it's all mild. I know the skin can be doing fine and then suddenly hit a critical mass of radiation and start to suffer, so I am keeping a close eye on it. I was mapped and scanned for my boosts today (which will start the week after next) and I have an attractive ring of Sharpie dots around my areola. Cute! The boost position will be less comfortable, but easier too because the boost beams are even faster than the regular ones and I won't have to hold my breath. I am fatigued but I'm always pretty fatigued! So this is only a little beyond my normal. I'm having a little trouble with my arm. I got a bug bite--I hope not a spider bite, because I'm pretty freaky about spiders, but it did look like that--and it itched, and I put on hydrocortisone and a bandaid and my skin reacted to the bandaid, which was new for me. A week on and it's still itchy, irritated, and spreading a little. The doctor, nurse, and PT all took an interest in it today, first time I'd asked about it. The doctor said to use gauze and paper tape and keep up the hydrocort. I'm also getting PT just preventively to learn some massage and stretching so I don't get lymphedema or cording later. I only had one node removed, but that arm is clearly changed. The best part of rads for me is having a different driver every day. Keeps it from feeling monotonous, keeps me interested and engaged (extra good since I'm half-time at work, and feeling a bit isolated), and I'm having fun with just about everybody who drives me. I feel so lucky for that. It takes a village! Online too--thanks everyone for the great community we have here.
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Hi, Janis. As a fellow reflux sufferer, I feel your pain. If you don't mind my saying so, you really do need a gastroenterologist to take a careful look at your esophagus, as this is the only way to determine exactly what damage your reflux is doing, why it's doing it, and how to make it stop. Please do not think any lovely noninvasive test for a bleeding ulcer will suffice. Whether that test result is negative or positive, you will still need visualization and treatment by a specialist, and waiting for the test result will just delay your getting where you need to be to resolve this issue. You are in pain, and it does not sound as though your NP has the tools to treat the pain or quickly identify its source.
I've had the endoscopy several times, and always felt perfectly fine afterwards. Moreover, I now have lovely color photos of the gorgeous inside of my esophagus.
Meanwhile, have you tried propping up the head of your bed?
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Spent the entire day in my flooded basement. The entire city is flooded. Could have been worst. I had about 2 inches standing but the worst was I could hear this dripping. So I looked closer and I had water spouts shooting water from my walls. Crazy. Never before. So I called my house guy and he sucked up water for 5 hours. Then we had to put towels down because it was seeping back in again. So after a good look around the house outside....I have breaks in my brick and it is leaking inside. Coming down my fireplace in the basement. So when it dries completely it needs some plugging outside and in. In addition some sealent and then a sump pump.
I have had ongoing small leaks before. Just sucked it up with a shopvac but not this time. I really am going to unload this house.
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Sorry to hear that BUNKIE.I hope you have some help.It finally stopped raining here and we will also be working in our wet messy basement this weekend.
Janis I hope your lump is just nothing I'll be praying for you.0 -
Oh Bunkie I am so sorry for the ongoing problems with the house. I can imagine how frustrating it is. I hope you get everything under control. Hang in there, things will surely get better. Sending you big hugs.
Brookside thank you for all the information. I am sure there will be a scope in my very near future. It is driving me crazy, the heartburn is so severe. I do have to sleep propped up on pillows. Lying flat almost always wakes me up with reflux. UGH!
Josie, thank you! Sew wants to have a pocket party, that will be fun. Wednesday at 1:00 is when I go in. I will feel tons better having all of you with me. I can hear you cheering me on already! I just want to find out for sure if this lump is something worrisome. My Slam-O-Gram is not scheduled until June, if they have to bump it up a bit that is fine. I have a good feeling it is nothing to worry about but will feel atad better when I hear that from the doctor.
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Hi y'all
Bunkie - flooding ugh:(
Josie - flooding too:( send your rain to the TX hill country we need it badly...wish it was that easy.
Janis - will keep fingers&toes crossed that your lump is b9 and nothing serious.
Kate - savor every moment of your visit! Fill you tank. Nothing like the love and giggles of grand kids very special...
April - hope your dd is okay...news is so crazy with this suspect in Watertown:( make time for yourself this weekend...we'll all be in your pockets next weekend 2X the fun...cakeballs!
RunFree - yeah 20/30:) mapping ready and boosts soon to come. Rest and relax and moisturize ... Luv all the sharpie marks on body. Hope the bug bite heals quickly and arm improves. I was measured yesterday for compressing sleeve have you? So cool that your rad riders have added fun to a daily grind)
Julz4 - think those are keepers...lot of XOXO:)))
My girl is so happy to be 27/33...we're trying to cool down and air dry...a weekend of hydrocortisone and emu oil...lots of free boobing time!
(((Hugs))) and enjoy your weekend!
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Cindy I will always make cakeballs for my friends. Just tell me what flavor you like. I can do anything. I have a lot of fun making them. I have compression sleeves and gauntlets. I also have this huge thick sleeve I am supposed to wear to bed. I don't, it is just too bulky. The massage really has helped my LE. It is very well controlled.
I wish we could take some of that rain too. It is so dry here. Mother Nature is one strange woman! Floods and droughts, could she be just a little more fair about distributing this rain? I do believe she has been in MentalPause for way too long!
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RunFree and RMCindy...so glad you both can see the finish line! I remember that feeling.
(((Janis)))I'll be there with you, always. We've come a long way and you're going to get a clean slate to go with that mended arm. I miss you too, am kind of out of synch and keep missing you on line.
Kate, what a wonderful visit! Grandchildren nurture the soul.
Kate, once I posted that I felt blessed to be Stage 1, and I got some very aggressive PMs from those who wanted me to know that NO BC is a blessing.
Of course I know that...and my statement was personal and I don't speak for anyone but me. I felt emotionally overwhelmed by the ladies I met who were young with difficult cases. I did talk to them and put their names in my phone to pray for them.
One more thing, Kate - I understand your approach to treatment. When I had surgery and rads, I worked every day and kept busy and dressed for work...(with my comfy camis underneath). If you do tire from chemo, I know you will listen to your body...that is not giving in to BC. You have dealt with so many setbacks in your recovery and you have adapted to each one as needed. You will do well. But for now, just cherish your time and write down your memories.
Sew, my trip was the most relaxing stress free 4.5 days in a long time. Kids were great; everyone happy, doing simple things. So glad I went. (free for me....DD got condo and I had air miles)
Bunkie, Josie, so sorry to hear you are dealing with a lot of water. My son lives on the Chicago River...not sure if they got the same...but he's up 40 floors or so.Hugs to all,
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9:00 PM -
April, and others with Boston ties, so glad it's over for now.
One of my best friends lives in Newton, next town...
So glad the children and parents will be able to sleep tonight and resume their lives.
Glad your DD is OK.
But so sad....for this young man to have been led so far astray and now is responsible for the death and destruction he caused.
I just don't understand some times...
For those who have lost loved ones and for the injured and the emotionally distraught....thoughts and prayers.
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Mostly Sew,
I wanted to hit the LIKE button for your post- I am someone who has never taken a day off other than the actual days of my surgeries. I have worked FT yet at home, mothered 2 kids, been a wife and continued to run a household during my 6 month journey with BC. My rads knocked me on my ass. I suffered a severe reaction needing wound care. To say I was miserable would be a understatement. I did as I was instructed by my RO and by others on the boards caring enough to help and give me tips, I just had to let my body do what it needed to do. I am now feeling better 11 days post rads. My DH and kids eyes filled with fear and helplessness was heartbreaking for me, today I am starting to get my spunk back! I also cared for the rad patients in the waiting room, we bonded and I am keeping in touch with them and pray every night they win their fights. I also took donuts on Fridays to all those getting rads and the techs, they all appreciated the sweet treat. So, what I am saying is your post really hit home with me, we are all different in how we feel and our needs are all different also. What works for one doesnt work for all. It doesnt make us weaker or stronger or braver it just makes us, us. I am proud everyday of how I have endured the best I could, and empowered at my love for others.
Thanks for posting what you did, I had to add to it for others to know its all okay, there is no right way or wrong way.
XO
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Cindy, glad you're got the hydrocortisone and emu oil...that and the weekend should certainly help. I loved those weekends during rads! And then only a week to go. Almost done!
Run Free....hurrah ....you're getting to final count down mode too, then you too can let the final healing begin! I'm glad you're getting pro-active LE training. I think that should be mandatory for everyone who's had lymph nodes removed. I ended up allergic to surgical tape after surgeries too which sure surprised me, but I think I'm over it now, 2 years later. Sorry about the spot on your arm and I do hope it heals soon without leading to further issues.
Bunkie and Josie, yuck, yuck, yuck is all I can say about cleaning up after flooding. And Bunkie, it does sound as though your house definitely doesn't want to deal with water. Lucky winter's just about over.
Joan...well said about this whole bombing mess. I don't understand these times either.0 -
Lemon I am so sorry you had to suffer. The good news is day after day you will start feeling much stronger. I had a very severe reaction and burned badly. My entire breast and underarm were big huge open oozing sores. My skin peeled many times over. This is unusual and I hope nobody worries about this. Some people never have skin issues with rads, but many do to different degrees. Mine was just very severe. The good news is that was then and this is now. I survived and rads are history now. I just look forward to many better days ahead. You too....you are a trooper and hopefully the worst is behind you. Hugs Sista!
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(((Lemon))) so glad you are recovering and healing. One thing I did after rads, because I had time to take off from work between semesters, was I stayed home for a week - 9 days straight - and just did whatever I wanted...after 7 weeks of rads over the Christmas holidays - I needed some down time.
You will bounce back - I was myself after about 2 weeks.
Nite all...the rains have arrived here.0 -
Lemon...I'm glad this resonated with you. And I'm so very sorry to hear about your tough ending to rads, but am rejoicing with you that you're starting to feel better. That fatigue issue is so strange. One minute you're feeling just fine, and the next it's imperative to sit down...immediately...and walking across the room is out of the question. I remember realizing about 2 weeks after rads that I could do more without getting fatigued. It was a great feeling! You might well have mini sort of relapse episodes, but they will be of shorter and shorter duration. Do remember to continue with the hydration and the extra protein. Your body has lots and lots of damage to now concentrate on healing...but heal it will and you'll just continue to improve.
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Julz4 I am so glad that I did not hurt your feelings. You are a lovely lady with too much on her plate. I am so glad that your swallowing is ok. I am also so very very very glad that your beautiful grandsons are doing. Well. I wish you only the best. Love, kate
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