Winter rads 2014-2015
Comments
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I've been away for awhile from reading all the posts. Kayfry, some time ago you asked me if the orange card is national. I don't know. Actually, I go to Johns Hopkins too and enter the Weinberg Bldg. from the street level and must scan there first. I realize you must come from the parking garage. I stay at the American Cancer Society's Hope Lodge during the week and go home to work Friday and Saturday nights, returning Sunday evening. It's been quite an experience at the lodge since we all have cancer but there are so many types and such sad situations. The wonderful thing is the support gleaned from each other and the many groups who volunteer to prepare dinner for us. For the most part it is students from local colleges and universities and this week a group from Georgetown U. travelled from Washington, DC. A Hebrew congregation prepared corned beef and cabbage and rutabaga soup for St. Patricks's Day. It has been a humbling and amazing time. I have just two more boosts to go and I'll miss my new friends. And all of this was free, financed by donations. I now intend to be a donor.
Incidentally, I was the only one at Hope Lodge who watched the "Emperor of all Maladies," and I think the subject matter was just too raw for many. I also discovered that my type of cancer, invasive lobular (ILC), comes from the father's side and having lost my dad to cancer when I was 21, I now feel closer to him and that he's with my in this. I've had my prescription filled for letrozole (Femara) since February and will begin next Wednesday, 4/08/15. I'm sure I'll meet some of you on a Femara site. I'm a little anxious about the potential side effects, but so far, my experience since diagnosis has been much better than I had anticipated. I feel like Cinderella! No glass slippers, just my brown Crocs, but what an adventure!
Congratulations to all who have completed the radiation and are healing and a "you GO, girl" to all nearing the finish line. Ms. Coyote, I'll have my last radiation on Tuesday, 4/07/15 and I'd love a smiley face. Thank you so much in advance and hugs to all.
Hygeia
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Hygeia, that explains the orange cards! Nice to know a fellow Hopkins denizen. I did go to the Weinberg bldg. for my simulation (and was issued my all-important orange card there), and of course my Lx was done at the main hospital. But for the rest of my rads treatment I was able to do it at the Greenspring Station facility in Lutherville. Since I live in PA near the Maryland line and near I-83, that's about a 40-minute drive for me each way, if I can avoid major rush hour/road construction traffic, as opposed to over an hour to JHH downtown. Since you had to travel farther (how far from your home?), it's wonderful that the lodge is available to you. It does sound like an amazing experience. I will have most of my follow-ups at the main campus, looks like. Did you have genetic testing that revealed the familial connection for your cancer? Or was there some other way to tell? That's very interesting. To my knowledge, there is no other BC in my immediate family. Other than some relatively minor skin cancers, the only "big" C we know about is on my mother's side, my maternal grandmother's colon cancer, so that's the one we've all be vigilant about most of my life. My DCIS kind of blind-sided me. I'm sure, and even more sure after watching "The Emperor of All Maladies" that connections will be discovered on the molecular level that will explain a lot someday. So glad you're almost ready for that smiley face, and that you're doing so well.
I'm a week out from rads tomorrow. I think maybe my skin is finished getting worse; the red areas are kind of darkening into red-brown in places, and the boost area is definitely the darkest now. Possibly eventually some of these areas will peel, but that hasn't happened yet. Tender around the boost (nipple) area, but I think the very itchy area around my upper chest/sternum area is starting to settle down a little bit, finally. Energy level still a bit sub-par, but not unmanageable. I try to keep exercising and eating lots of protein and hydrating, slathering the Miaderm still.
I hope everyone is having a lovely spring weekend.
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Started rads on March 16th. Three weeks down, three to go. We will make it. I'm also on the Femara board, having started late January after chemo. Blessed Easter and Passover to you all. Getting dressed to go see our great granddaughter. Love, Jean
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I started anastrozole almost a month ago and I'm finding the SEs totally manageable. Yep - the hot flashes and night sweats are back and my right knee and left Achilles tendon are not happy with me, but it's nowhere near what I'd imagined. My new iPhone has a Health app which monitors my daily steps and I've found my best days are when I walk 3-4 miles. It's enough activity to keep my joints moving and make me tired enough to sleep through all but the worst night sweats but not so much that I'm sore the next day. Thought I'd interject my 2 cents.
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hygeia. So many good things seem to happen within the unfortunate and challenging world of cancer treatment. Your experience at the living facility at Johns Hopkins is remarkable and heartwarming. Thanks for telling us about it.
I have ILC also but had not heard about a relationship to a paternal line. Can you tell us more about that?
Glad to hear about healing from several people. You will be there soon, Jean.
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I wonder if anyone here has had the experience of catching a cold or some other relatively minor virus in the near aftermath of rads? Did it absolutely wipe you out, or is it just me?
So I'm a week out as of yesterday, and think I've been doing pretty well. Skin did continue to get worse for about a week after the last treatment, but I never blistered, no broken skin. Worst was the itching, especially one area over the sternum, and finally the last few days I think that is almost back to normal. I'm still pretty red, especially around the nipple which was the boost area, redness is gradually darkening to brownish red, and I keep slathering with Miaderm and I think it's going along fine. Some swelling, not too bad. I've felt a bit tired, but it's been pretty manageable.
So then last Friday, 4 days out from rads, my husband had a scary episode in the morning that meant I had to take him to the local hospital emergency dept. to figure out what was going on, and he wound up being admitted for further tests overnight and the next day. It turned out okay, it was an ocular migraine, nothing terrible found such as a stroke or anything. He's fine. Then the next night our daughter arrived from Brooklyn,NY (about 3.5 to 4 hours from where we live) for a planned visit, along with our barely 4-year-old grandson, our SIL who has been paralyzed as a severe complication of MS since last October (so he's currently in a wheelchair), and their dog who is sweet and easy but whose presence tends to set off the neurotic one of our two dogs. Grandson is adorable and smart, but pretty demanding. He arrived with a snotty nose and cough, a cold under way, not really sick. Than last night I came down with a cold overnight, and today I am feeling truly exhausted. Sore throat, achy body, runny nose—standard cold virus symptoms. I kind of dragged through the day, but managed and enjoyed the time with family. However, when our daughter suggested grandson might stay with us here while his parents drove back to Brooklyn because of work obligations, and would stay here with us until they returned for him sometime on Saturday, I just had to say no. The boy has always stayed up late, late, late, generally doesn't go to bed before 10 pm at the earliest, and my husband rarely makes it past 9. He said he wanted to stay with us, but if he changed his mind (as he's been known to do), no way to get him home, a 7-hour round trip drive. I feel bad to let my daughter down and for her to think I'm making excuses to get out of grandmotherly duties (not that she said or thought that, I'm sure), but I also feel probably no one really understands what I mean by radiation fatigue. It's not something one can see, right? I think it's just the combined effects of post-rads, extra stress, and then the cold virus on top of all that, and I expect I'll soon feel better. I really have never felt this tired before in my life, and I don't like it one bit! In addition, I'm so far behind in my own work that I really must pull myself together to get back on track.
I was just hoping and hoping to stay healthy through rads, so I could stay on schedule and get done, and I did it. But now, yikes.
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Oh Kayfry, I understand, truly. RADs may be done but we're recovering and it takes time. No colds yet but I'm still struggling with pain and radiation issues. My radiated boob is very hot compared to the other.
I'm sorry about your DH but glad he's ok.
The stress and trauma of cancer impacts our loved ones in ways we probably don't know.
Hoping your daughter understood why you had to say no this time. I have young grandsons and love them dearly. But, I watched them several times during my treatments and it was so exhausting, like to the point of tears!
You'll have time with him when you're well and have your mojo back!!!
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This was a well done documents-movie..
Cancerpants—a story told through the eyes of Rochelle "Ro" Poulson is about life, love and a young woman's journey with breast cancer.
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Kayfry, I caught a terrible cold about one week out of RADs. Wiped me out. The cold on top of the terrible fatigue I already had and the pain from RADs. I was just out of it
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I think we are not really done with rads on the last day of treatment. Also there is a letdown from the push to get through. Kayfry. You were certainly vulnerable to germs. When you are over the cold and feeling your energy return, you can offer to take your grandson and give your daughter a break. Guilt is tiring. It is okay to put your needs first, even if you do not usually do that. Hope you feel better soon.
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Thanks, ladies. Well, now I know why I felt so exhausted and overwhelmed yesterday. Apparently the "cold" I caught was more like the flu. Last night I got really sick- feverish, aching body & head, and vomiting along with the sore throat, stuffy nose, sneezing & coughing. Ugh. It would have been impossible had we agreed to keep our grandson under those circumstances, and I'm sure my daughter will understand. I may have actually caught this bug from my techs and/or RO, how's that for irony? The last time I saw my RO-next day after that, she was sick, wearing a surgical mask and I overheard her and my favorite tech discussing how wiped out the virus left them, that they could barely drag in to work. Add rads to that, with immune system affected, and it's a perfect storm!
Feeling a bit better this morning. Yes, we have been under much stress, with my Dx and our SIL's life-changing illness. And my husband's new teaching job that he likes but it probably was a factor in his health scare last week. We will take our grandson when he's a bit older and things are a bit more under control. I am also very far behind in my work and need to try to catch up. Come back, energy
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Kayfry ~ I suspect that your daughter understands, but there will be those people out there who might not. Right now, it is all about you. It has to be. Your mental and physical limitations are very real. I can't say for sure if we will ever be 100%, but I do know at this point in the process we aren't. It's okay to say "No". I even think it is a smart thing to do. They take so much effort and energy just to keep them out of harm's way (then consider all the rest of their needs.) Personally, I just wouldn't be a safe guardian for my 3 year old grandson right now. I can't imagine how difficult and scary it has to be for those of you with young children during this process.
Quiggy ~ That was a good link. I put the article in my favorites list. It says with some authority what I felt to be true. Reaching the end of treatment is not the end of the effects of treatment. I felt just fine when I started this whole thing!
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I have been done with rads for about 4 weeks, and I still have some discomfort under my TE over my rib where I was radiated. Noticed it much when I had an ECHO half way through rads. Anyone else having such symptoms? -
Coyote - Please give me my smiley face! Finished my last boost today, rang the bell and got my certificate. I'm so glad to be at the end of this part of the journey. Glad I finally joined the rest of you who are done!
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Super news Farmerma!
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Congratulations Farmerma! Welcome to that next stage of our journey. I can really relate to the grandchildren issue. Mine are 7, 9, and 11. Good kids but high energy. After a long weekend of birthday cake decorating and celebrations I was pooped. I just said no to babysitting. It was hard. 4 weeks out from rads and I'm still not 100%.
Now I have drainage from the plastic surgery scar from the methylene blue debacle. I am so tired of focusing on my boob I could scream! It was supposed to be over! Hopefully no infection. Have an appointment with the RO. Though it's probably not his problem he agreed to see me, bless his heart. Am due for my follow up next week anyway. Sorry to bitch. I know this doesn't effect anyone but me. I am just so tired of all of this.
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mqt64, hopefully there's no infection. Enough is enough! So sorry it seems never ending.
I totally get it, I'm tired of feeling shitty and fed up with boob issues! I know it will be better someday for all of us.
Keep us posted and I'll send positive vibes your way.
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farmerma, congrats!!!
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Farmerma, congrats!
My shoulders are still hurting. I have PT appts through the beginnin of May to deal with the shoulder pain.
Coyote, so agree with you -- Reaching the end of treatment is not the end of the effects of treatment. I like many others felt fine before treatment. Now my joints ache, shoulders are stiff, I have lymphedema in the arm and breast, lingering GI issues from chemo, etc, etc, etc. I had to have a frank conversation with my husband that these SEs maybe around for a while. I told him patience, acupuncture, exercise, yoga, massages, etc. I am also looking to a naturapath as recommended my the centers nutristionist.
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When one has a major surgery like open heart, no one expects them to run a marathon in a few weeks. Why would anyone expect us to be back to normal as soon as treatment is over? With the trauma our bodies have been through I would think it would take at least a year to recover. Ladies, be gentle with yourselves. Love, Jean
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farmerma ~ Hooray for you! One more leg of the quest is completed. Congratulations.chrissie ~ I had intense rib discomfort. MO said it was inflamed. I still get periods of pain - just not as long, frequent, or intense. Last rads on December 19, so the se's linger on. I expect that I will have to give in and do the PT .... I still have range of motion issues in my shoulder and it is getting worse - not better. Ratsle-fratsle.
I'm sure we all hate seeing that we have limitations on what we want to do. I know I sure do. I've been putting in a flower garden around my studio, and I'm discovering all sorts of physical limitations that I never experienced prior to bc. My loss of strength and stamina is the most annoying thing ever. But ... I do remember a few months ago I couldn't climb all the stairs up to the bedroom at one go. I had to sit on the landing and recuperate. Now - no problem. By the time I'm 85, I'll be as good as new!
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This is our list of Winter Warriors as of April 12, 2015 - We are coming 'round the bend. Hooray! Spring is here!
October / November Start
MeneK – Oct 24
.................... MagicalBean - Oct 28
......... Mmtagirl - Nov 3
MarieBernice6234 - Nov 4
... Hope50 - Nov 5
.................. dennyvol - Nov 5
CAS4 - Nov 6
........................ Beachbaby65 - Nov 4
.......... CoyoteNV - Nov 10
Lush61 - Nov 13
.................... Rosa54 - Nov 13
................. Beachlady28 – Nov 17
Nomatterwhat - Nov 17
......... LMVerma Nov 18
................ katieC12 – Nov 18
Lorrilynne - Nov 18
.............. Gongshow18 - Nov 20
.........Yikes1 - Nov 20
Birdgirl11 - Nov 23
............. Perfectlyimperfect39 - Nov 23
Singsing1020 -
December Start
Pita119 - Dec 1
.................. SandyLovesLucy - Dec 1
......... AnasNana - Dec 1
HockeyCat - Dec 3
......... . CanuckMom Dec 4
................ MeanMomto3 - Dec 4
JustJean - Dec 5
............... runningcello - Dec 9
............... carynbrit - Dec 10
ForHisGlory - Dec 10
........ Davida58 - Dec 10
....................SCMom - Dec 11
eileenpg - Dec 16
.............. Linzer – Dec 16
....................... WndrWoman - Dec 16
sweetbanker - Dec 16
........ labelle - Dec 17
....................... Slavrich - Dec 27
InGodshands - Dec 18
....... Catie57 - Dec 18
........................ lilactulip - Dec 18
PoppyK - Dec 29
.............. kpmacmill - Dec 29
.................... Jlynn13 - Dec 29
gretchy - Dec 29
...............Bellegirl - Dec 30
January Start
reader425 - Jan 2
................ILCMom - Jan 2
....................... Purrrrana99 - Jan 5
Cath57 - Jan 5
.................. Professor50 - Jan 5
....................fossf - Jan 7
Lulubelle1 - Jan 8
............. lescover - Jan 8
....................... Nancy6540 - Jan 12 .
Saltygirl - Jan 12
...............aj103014 - Jan 12
.................... Fionascottie - Jan 13
Magdalene51 - Jan 15
...... quiggy - Jan 19
....................... Annie88 - Jan 19
chtease - Jan 19
................ Bippy625 - Jan 20
......................Dacre - Jan 20
feelingoverwhelmed - Jan 20
....KYBLUEEYES - Jan 20
......Beachbum1023 - Jan 22
Cavalier - Jan 22
................ mqt64 - jan 26
........................... Sjacobs146 - Jan 26
Windgirl - Jan 28
.................. Hotrodmommy - Jan 29
February Start
JeniferE - Feb 1
.................. LARock - Feb 2
............. Chrissie29 - Feb 2
gemmafromlondon - Feb 2
.keri71 - Feb 6
.................... ladyb1234 - Feb 9
Mm68 - Feb 10
................... CassieCat - Feb 12
............ Texas94 - Feb 16
Leslie58 - Feb 16
.............. farmerma - Feb 23
............. Dotwithkitties - Feb 23
SunnySydeUp - Feb 23
.... Allmodestyisgone - Feb 24
.... brandyrose - Feb 26
Scubawoman - Feb 26
March Start -
gtlucky - Mar 2
..................... sybilskelton - Mar 2..................... Kayfry - Mar 4
WheelyGirl - March 5 ................... Booklady1 - Mar 9
............... Hygeia - Mar 13
zjrosenthal Mar 16 ........................Shelleym1 - Mar 16 .................... Redhead01 - Mar 22
April Starting - Spring Sister
cbooklvr
Special Sister Warriors and Warriors who stopped for a visit, but for various reasons didn't stick around. No start date determined. We wish them well.
Minnielee; surrrana99; Coloradocancermom; Shuf; bjeaneg, knittingPT, Shayne36, KGotThis, ckr1956, funthing42, MaggieCat, intothewoods
No Rads needed !! Hooray!!
ThinkingPositive
.....................Mary59G
= Reported Complete
= Should be Complete by now.
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Congrats, Farmerma! And I feel for everyone still suffering the SEs, be it chemo, rads, surgery, or all of the above.
Call me stubborn, but I refuse to accept that it could be a year before I recover from this. That said, many people have had a more difficult road than mine, with multiple surgeries, chemo, LE, hormonal therapy, etc. And, too, I recognize that in some ways we never "recover," in that we're bound to be forever changed by this experience, both physically and mentally. In addition to my awareness that I could always get a recurrence or a new cancer, I have the scars on my breast and whatever permanent changes that radiation gives me to remind me of this time.
But . . . I do expect to get back to my pre-cancer life asap. This thing has already taken enough of my time and energy! And as others have said, I'm tired of thinking about my boob. It has really knocked me back to get a flu virus just a week out of rads. I'm feeling ridiculously weak and tired today, but I think it's the one-two punch of the virus following rads that is the main culprit. As for other rads SEs, I'm happy to say that the itchy rash on my chest seems to finally be gone. Yay! But now I have some pains I didn't have before, mostly in the boost area, which is also turning a very impressive shade of deep red.
So no, I don't expect to run any marathons, but I couldn't do that before, eitherI do expect to be able to keep my grandson when he's a bit older and I'm stronger, but not right now. And everyone, especially me, will have to just accept that. I do expect to get back to my work and my horse and my dogs, and to not always be so tired. I'm not ready to give up my active life yet! Isn't 65 the new 45? Well, that's my story and I'm sticking to it.
No one understands all this the way we here do. Thanks to everyone for the amazing support.
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Hi ladies- I haven't been around since about week 4 of rads but did finish last week April 1st. Yay!
After an incredibly rough road through chemo (I was pretty much face down for 6 months... good GOSH), I was thrilled rads wasn't too terrible. I had some anxiety issues in the beginning and even hyperventilated a couple of times (ha), and I felt tired starting week 2 and really hit a wall of exhaustion at the end of week 4, but my skin did OK. It definitely got red and a bit rough, and especially in the middle of my chest I had a lot of peeling and itching, but nothing was what I'd describe as awful. I had one spot on my back right above my underarm got very dark during boosts and then peeled and looked raw, but it was only tender and not really painful. I think having a previous reconstruction helped, since I didn't need to wear a bra and because I have implants I don't have a fold under my breast. I can see how any sort of fold either there or at the underarm crease could contribute to a very sore or raw area! FYI I used hydrocortisone with aloe for itching and Nutrishield for intense moisture, though I went without anything for 2 weeks on doctor's orders. If an area itched, I'd use a bit of Vicks vapor rub. You'd think it would sting, but it doesn't, and the cool feeling helps a lot with itching.
My worst issues were a feeling of very heavy tightness and numbness on my entire left side into my arm and muscle soreness in those areas (more under the skin, so creams didn't help). None of this feeling has improved one bit in the past week and might even be worse now. I told my husband the best way to describe it is feeling as if I have a huge "dead" area that needs to come off (I know- gross!). However, I had a level 3 ALND prior to rads, so I know this makes it much worse than if I'd gone into rads without it.
By far, my worst problem right now is joint pain from head to toe. It began around week 3 of radiation, but since it's not concentrated to my left side, my doctors have told me it's not related. Maybe it's from chemopause? I also had an oophorectomy week 4 of rads, so maybe that's added to it as well (though the pain started before surgery). My chemo SEs had already almost gone away, so I have a hard time believing it would be the chemo itself affecting me. I'm SO concerned about starting Femara next week with its super common side effect of joint pain. I'm only 43 and already feel 90. On Femara I'm afraid I won't be able to walk!! Would love to hear any suggestions if anyone has them (or if anyone else is experiencing the same?). I'm miserable and want to figure out a way to rejoin life and become active again!
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Farmerma, I am doing my happy dance! I hope one we can all meet and take the bells down...............Have a merry magical evening! Cheryl
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Hi Kayfry, I agree that getting back to life is difficult! I have always worked and have been very active. I would walk 11,000 steps per day, and now I struggle to make half of that. But day by day, I hope we find our old life, with a new twist. Good Luck, Cheryl
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Beachbum and Kayfry, I agree, I will get back to my life but I do accept that there are changes that I need to adjust to and incorporate into my new life. An example I must be cognizant of LE -- it onset pretty early but with the insight of my RO and help from my LE PT it is being managed. I am determined to get back to the physical shape I was in before cancer, better if I can or close to it. However I know that I must take it slow and no rush. I was a pretty healthy eater before BC but will add supplements. I have a goal to run a 5K in Sept -- maybe not at my record pace but I will run. Like others this journey has changed me forever mentally, emotionally and physically. I plan on using the changes to my full advantage. Main thing I have realized I can not go back to being a workaholic and travel so much -- but that is me (big smile). I will learn to relax more and not be such a go-getter in terms of job, career, etc. I will focus more on what I love to do such as focus on Ministry and outreach to young girls and women and continue to volunteer coaching young girls and women in technology and leadership.
My progress: I not only have tender areas in breast, but shooting pains underarm and in breast and restricted ROM in both arms. The silver-lining the breast is healing quickly. Just need to keep up the stretching to keep ROM in both arms.
Love all of the smiley faces! We almost have a full board of smiley's. Woot! Woot! And spring is here.
Hugs to all!
-Angie
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Farmerma- Congrats!
I'll take a smiley face too and do the happy dance with you- I also finished today!
I brought my rad team a basket of fruit, nuts and granola bars...with some chocolate candy also. As luck would have it, I had a major coughing spell in the middle of my boosts and they had to stop and restart tx. Ironically, the same thing happened the day of my lumpectomy during the mammo guided wire loc procedure. Adrenaline or anxiety?
Was pampered all day too. Hubby made breakfast and then showered with gifts, chocolate covered strawberries and sushi at work.
I am just so thrilled to be done and to turn the page! Will be moving on to the Tamoxifen threads (ugh!)
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SunnySyde: Your day of pampering and being finished sounds fantastic! Congratulations!
I have 2 boost treatments left. I can't wait
I had a little infection starting on my nipple but the silver cream has cleared it up. I had terrible fatigue this week on Tuesday and Wednesday but seem to have turned the corner now. (my last full breast zap was on Monday)
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