Winter rads 2014-2015

Beachbum1023

Hi Hope50, My emotions are all over the place from one minute to the next. Since the first week of June, I have had 94 Doctor appointments!! And I worked full time 42 hour weeks. Not sure how I did all that, but it is a blur right now. I am seeing my RO tomorrow to schedule to start the rads. I am just afraid that by doing the rads to prevent a return, that the mets will grow crazy and I will second guess if I should have gone back to chemo asap. The rads scare me because I have heart damage from the Adriamycin, some side effect that is. The Tumor Board agree that I should do the rads then chemo. Depressing for sure. I really wanted my hair back for summer.

So I get the swing from high to low, good days and bad days. I try to keep it all happy and positive, but I feel like I take steps backwards all the time. I was told that because we so depend on our care teams that when things change we react badly because we fear what could happen without them. And when our heads go to the dark place, it can be very depressing and confusing. It's cold and snowing, no sun, I live alone, and I am not working so I can go to treatment. I totally understand the "blues". And soon as we complete the treatment, we think we should all good to go, 100%! Uh no not really. I'm still fighting the side effects that linger, trying to recover from a mastectomy, and now rads?? And more chemo??

So for the rads graduates, any helpful info you can share to get through this hurdle? Thanks!

WndrWoman

Hope50 I have a relative with ovarian cancer and she had a hard time when her initial chemo and radiation ended. She felt suddenly "unprotected" and vulnerable because she had stopped doing the things to treat her cancer. My center has a 6 week survivors class to help women with breast cancer make that transition. It is not surprising that it catches up with us.

WndrWoman

Hope50 There is a book group on these discussion boards. Lots of ideas there.

ForHisGlory

I just read "Wild" by Cheryl Strayed. I enjoyed that. I also enjoy all books by Jodi Picoult and Kristin Hannah.

I've also read a couple books about personal stories of fighting breast cancer. If you're interested I can share those as well. Not sure if you're reading for an "escape" from our reality (which is where I am at now) or if that sounds appealing? (I read it soon after my diagnosis when I could think of little else)

I've just started reading again since surgery. I just couldn't focus on books there for a while. There is a thread regarding that subject that is really quite interesting.

Pita119

Hope50,

I was just thinking about how depressed & emotional I've been lately. I agree with you that these past months of surgery, tests, treatments, etc. are just hitting us now. I was looking through the thousands of pictures that I haven't organized all my life and got very weepy when I came across the ones of my mother's 70th birthday party that I threw for her. She battled breast cancer for 18 years but was a true fighter. I laughed a little when I found the invitation that I sent out inviting her family & friends to an "antique" party. Life really is not fair. We can't change what happens to us. I just reread a book that made me laugh. It's called "The Interuption of Everything" by Terry McMillan. She is one feisty lady but her story lines are great & she writes with a lot of humor. Maybe it would help your mood. I will keep you in my thoughts & prayers that this cloud lifts for us so that we can enjoy life and being healthy.

lescover

Doctor says that my skin is already "redder" than they usually see at this stage of treatment (#4).  Anyone else start showing SE this early?  Slathering on the radiation lotion every time I visit the restroom.  I was tanning weekly prior to my diagnosis, so I was hoping my skin was toughened up.  Not such luck!

yikes1

eileenpg,

I would appreciate a list of depressing books as well.

thanks.

Cavalier

I met with RO for the first time today. He asked 'How are you doing?' I wanted to respond, 'I am in the RO office with breast cancer talking about getting radiation, how the #%€£ do you think I am doing?' But instead replied, 'I am a very lucky woman as this was caught early and my prognosis is good.' Talk about being all over the map! He said my incisions are healing well and gave me the good news that I am a candidate for 16 treatments. I have the sim next Tuesday and start rads Thursday, my son's birthday, January 22. It is daunting but I am ready to get started and get this over with. I have armed myself with lotions and bras suggested by you guys and thank everyone for the support. Can you listen to music while getting treatments?

If you want a book to help with the emotional aspects of life taking a bad turn, my favorite is "The Road Less Travelled" by Scott Peck. The first sentence in the book is 'Life is difficult'. You've got that right!

One of the best novels I have read recently is "Cutting for Stone".

If you want a wonderful series read "Outlander" by Diana Gabaldon. If you like it there are 8 books in the series so it can keep you occupied for a long time. They have made a TV show on Starz of the book which is awesome. Great escape from BC!! Jamie Frazier is one gorgeous man!

yikes1

Beachbum1023

Not sure I follow something you wrote.

You are having radiation to your right breast - correct?

Not sure that will affect your heart if that is your concern.

Cute - I am now a rad graduate! Sure did not think of it that way.

I can understand your concerns. It is so hard to second guess any of this.

I think many of us felt that the start of the radiation was the most difficult, at least I did.

You have a lot on your mind, so in a way the radiation may give you a break, like a time out.

You may have more answers tomorrow. Ask how many treatments you will get, and what lotions to apply.

yikes1

I think it should have been effect, not affect in the above comment.

yikes1

Hi lescover,

Does your doctor think the redness sooner could be related to the tanning?

I think it could be related. Not necessarily bad. Keep using the lotion - seems to be very important.

I went back and looked at one of your previous posts.

I am not the expert - but a shorter course could mean more radiation at each visit. If you have problems with your skin they may opt for the longer time period with less radiation each time.

yikes1

Lescover,

Now I am not sure you did write about a shorter course!

CoyoteNV

Hope - It's interesting that you wrote about the "Now What? Syndrome" today.  I really understand that.  I went to my post chemo (3 months) appointment today and came away feeling rather flat. My doctor is great and very supportive and thinks I'm not telling her all my issues or that in my tendency to just drive on through them, don't recognize that I have them. I digress. My husband and I talked about the "Now What?" and I said the same thing you did in you post.  I think it is more important than ever to have an emotional support group.  I'm going to look on the BC.org website for a place I fit in best.  I know there is one or more, because I've met so many, whom I would love to know in person, in the chemo and our rads group.  We are never, ever going to have to be alone.  I so think there is a physical component to it all also.  Perhaps the adrenaline that has been pulling us through all of those activities has dropped off - thus the let down. 

If you like non-fiction, one of my favorite reads lately is Apocalyptic Planet by Craig Childs.  It's not all doom and gloom like it sounds. Childs travels around the world to places of great climatic and geologic change. He is a very exciting and educational writer.  It's scientific, adventurous, travelogue of some of the most astonishing places on earth.  I'm actually rather surprised he survived to write the book!

eileenpg

Yikes1

Ok,Here is a few of the books. I read a lot about WWII Germany.

The Garden of the Beast

The Nazi Officers Wife

The Reader= Great book,bad movie

Triumph of Hope

I also loved The Loves of Josephine Life of Josephine Bonaparte

I also loved Z =Life of Zelda Fitzgerald

WndrWoman

books

All the Light We Cannot See by Anthony Doerr - two young people's lives come together in WWII France.

Marseille Caper by Peter Mayle - there are three Caper books, can't remember which is first, very light with lots of description of food and wine

Bruno, Chief of Police by Martin Walker - sensitive detective in appealing French village

MagicalBean

Hope-Check out Goodreads. I get a lot of ideas from them.

CAS4

I loved Penny Marshall's new autobiography, adore Kate Braestrup "here if you need me"- I read two books a week, always have so I could put an endless light here- for funny I adore "let's pretend this never happened" by Jenny Lawson

Pita119

CAS4,

I like to read funny books so I think I'll pick up "let's pretend this never happened". Thnx

dacre

I'm all marked and ready to start radiation on Tuesday. Why a purple marker is used I have no idea. I would think they could at least mark me with a color that goes with the rest of my wardrobe...or at the very least PINK....I know that probably isn't anyone's favorite color...but it has always been my fav. Out of work, and let me tell you all, the meeting went very well yesterday. Mostly b/c I brought the Union with me....I'll update later!!! Happy Girl...as much as any of us can be happy..!!!

WndrWoman

Three cheers, dacre! !!!

I asked if the tattoos could be any color I chose, and the tech said I could choose black.

MagicalBean

Yea, dacre. You must be so relieved.

SandyLovesLucy

Dacre, that's great news!  Now you can concentrate on taking care of yourself. I never had any sharpies used on me, I guess my stunning tattoos were enough!

Cas4, Let's Pretend This Never Happened is my new favorite book title. I just bought The Girl On The Train which was released this week.  It has gotten a lot of press and good reviews. I also downloaded a book of short stories, Death by Pastrami, which centers around the NY Garment District.  Another fabulous book title.

Cavalier, good luck as you get started. I can identify with the things that we say only in our head and those positive statements that come out of our mouths.  For a while I kept hearing "It could be worse."  Yeah, I know, but having breast cancer is BAD ENOUGH for me right now, thanks!

I finished what turned out to be 31 radiation sessions including 5 boosts yesterday. February 13th. YAY!  My doctors, nurses, and technicians were all wonderful and there were hugs all around. My team had a "less is more" attitude about using creams, etc. so I got by with using the Natural Care aloe gel and cornstarch, then added hydrocortisone cream for the folliculitis rash on my chest. I was very lucky that the rash and some irritation like a sunburn under my arm were the worst of the side effects. They told me that the area that got the boosts is likely to get more red in the next week or so. I still have some fullness and tightness in my upper arm and shoulder and am doing stretching exercises do deal with the tightened tissue caused by surgery and radiation. I will have a follow-up appointment with the RO in three months.  I have a tendency to try to bundle medical appointments together to save on trips to the hospital but was advised differently. The RO nurse said that many people have an emotional let down after active phases of treatment end and that staggering appointments helps patients feel like someone is still taking care of them on a regular basis.  I thought that made sense. So I'll see my MO in February, RO in April, and BS in May.  I'll also be getting Herceptin every three weeks until July so I'm not exactly getting cut loose yet.

Thanks to all of the warriors here who have shared experience, tips and strength.  What an awesome group of women!

Hugs, Sandy

LMVerna

Hope,

I finished my rads 2 weeks ago and instead of joy, I have also had the blues. I blamed it on my skin irritation but that has cleared up immensely but still feeling blah. I actually went a whole week without a treatment or doctors appointment! Of course my son had his wisdom teeth out during that week so I took him to two appointments! I think the extremely cold weather hasn't helped either. Still feeling very fatigued.

On the upside, my skin is much better and my reaction had been pretty severe. Even the techs had said it was one of the worst they had seen. I had my follow up appt with my RO and she thought I looked good. She gave me a big hug and said she was very relieved because she had been worried about me. It's nice to feel like your doctor cares. It was weird when she said she didn't need to see me for 4-5 months.

SandyLovesLucy

Hope, pita, and lmverna, I've been waking up at 3 or 3:30 every morning for the last week or so.  For me, that is a flag for depression.  I told the RO that and that's what prompted the conversation about staggering medical appointments for a while. I already take medication for depression but may need to adjust it if the sleep issues and anxiety continue. Like Beachbum, I feel like I swing between highs and lows emotionally. Some days I realize what I've been through and have a hard time catching my breath. It was great finishing rads and my friends and family all said that's great now you're done. Well I'm not done with treatment, and I'm not done wondering if I'll really be okay.  Most days I find the faith to stay positive but other days are much harder.  I'm glad I have this safe place where I can talk about things that all of you understand. Much love to all of you who are struggling.

LMVerna

Sandy

I agree. I am watchful of the signs of depression. It is hard when everyone is so happy for me because I am "done" but I'm really not. Herceptin continues until August. Still looking at two more reconstruction surgeries. Feels like I am still so far from the finish line and this has been going on since June. Most days I can look and be grateful to have made it past the radiation hurdle but some days it is very hard.

CoyoteNV

This is our list of Winter Warriors as of January 14, 2015 - I'll do my best to keep it current. Let me know if it needs a change. 

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

eileenpg - Dec 10  ..................... ForHisGlory - Dec 10 ..................... Davida58 - Dec 10

SCMom - Dec 11.........................ILCMom - Dec 15...........................  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..................... Purrrrana99 - Jan 5........................... Bippy625 - Jan 5

Cath57 - Jan 5  .........................fossf - Jan 7 .......................................Lulubelle1 - Jan 8 

lescover - Jan 8  .......................Nancy6540 - Jan 12 .......................... Saltygirl - Jan 12

Fionascottie - Jan 13 ...............Magdalene51 - Jan 15......................... quiggy - Jan 19

Dacre - Jan 20 ......................  feelingoverwhelmed - Jan 20................ Beachbum1023 - Jan 22 

January Start Dates Not Known

Windgirl - Jan ? ....................... KGotThis - Jan ?

February Start

JeniferE - Feb 1 ........................ LARock - Feb 2

No Start Date Yet

 Shayne36 - ? ......................... knittingPT - ? .....................................Cavalier - ?

Sjacobs146 - ? ......................... gemmafromlondon - ?

zjrosenthal  - Rads delayed by surgery, until ? Honorary Winter Warrior

Warriors who stopped for a visit, but didn't stick around. No start date determined.  We wish them well.

Minnielee; surrrana99; Coloradocancermom; Shuf; bjeaneg

= Reported Completed

 = Should be Complete by now.

 

quiggy

CoyoteNV, thank you for keeping the list and this board, you can change my ? to Jan 19. I did the SIM last week, only cried on my drive home.

Doing my scan on the 16th and RADS start on 19th.

Nervous about what this will do to my skin, heart and lung but glad to finally start so I can finish. I'm down for 30 RAD plus 5 boosts.

Any suggestions would be welcomed.thanks 😨

Cath57

1. Thank you ladies for sharing all your " good reads"... Can't wait for a time of rest when I can chill & read! It has been a hellish year for me. I opened a little boutique featuring my painted furniture & art in Oct of 2014, was diagnosed w/ BC in March of 2014, & because delays on all sides ( work, surgeon's schedule, 2nd opinion w/ another surgeon, her schedule, my work schedule.... Etc etc, ) finally had my lumpectomy in Sept '14, 2nd recision Oct14', closed my shop, because too much on my plate with starting a huge project with my decorative painting biz. ( need the $$...husband on disability, so can't survive on 1 income). Now I'm on day 9 of rads & trying to finish this job so I can just "be" for awhile. Intermingled with all that, my DH & I are trying to work through a strained relationship that was ongoing prior to diagnosis.Whew! I'm sorry I went on & on but I feel like this is the only place that I can truly unload where there is no more unnecessary drama added to my life, just support & encouragement to which I'm truly grateful! Thanks ladies for listening to my rant... Hugs to you all !

MagicalBean

Rant away, Cath. Life can be overwhelming without this crap on top of it. I have to think we'll come out on the other end as stronger, wiser, and happier women.

I had a follow-up with my RO and my MO this week. My RO is concerned with my "positive" attitude. He seems to think I'm repressing my true feelings because I'm always upbeat. He thinks it's a sign of depression. Seriously??? He didn't see my August breakdown, when this adventure began . Once I was able to absorb what was happening, and I knew where I stood, I decided I would not give BC any more attention or energy than it deserved. I refuse to let it change my outlook. I really believe the adage "it's not what happens to you, it's how you choose to react to it" is the secret.

Enjoy your day, everyone. I'm off to work on a baby quilt that has to be done in a week. It's all hand pieced and quilted so I have to kick it in gear.

dacre

To CoyoteNV: You can update my starting date to January 20th....33 treatments...Looking forward to Spring....