May 2012 radiation

BLinthedesert

Hi SB ... there must be a way to have it all (pretzels and boney ankles) :-)

I did very gradual build-up in my mileage over the past 6 weeks, and was having no problems at all until last week, and then all of a sudden I am having problems breathing.  I don't think I have sped up suddenly, I don't wear a garmin but run by how I feel, and am generally a pretty good judge of "effort level".  It is a little disheartening, mainly because even at altitude (Flagstaff is 7000 ft) things were going SO well!  And, I am supposed to run a race in October and if I can't start doing speedwork soon I will have to bag it ... not the end of the world, but I will only be 50 once!!

sbelizabeth

You know, BL, I've come to the point where I'm getting used to encorporating changes to accomodate breast cancer, and that's just life.  Life, thank goodness, because they caught my cancer before it reached my bones, liver, or brain.  I'll do yoga to ease the Femara aches, wait patiently while wearing my foobie until I can get reconstruction done, and protect my arm from lymphedema-inducing injuries.  For me, my life changed last October and there's no going back. 

Nevertheless, I can go to work every day and ride my bike like a crazy woman.  I am blessed.  And I'm OK with giving up Doritos, pretzels, and salty nuts; I shouldn't be eating them anyway, and if my ankles swell it's a good wake-up call to what they're doing to my butt!

Sudden breathing problems would be disheartening to me, as well.  Do you have ANY effects when you're not running?  Difficulty taking in enough oxygen sounds like a pulmonary embolus to me, but that's a pretty extreme idea.  I would get it checked out by someone who knows your history.  I've raced my mountain bike and I know how disappointing it would be to miss October's competition, so maybe if it's something an inhaler could fix you'll be back in the game.

We're off to visit our son and daughter-in-law, along with the little peanut.  I know he/she still has gills and a tail, but we'll say hello to Julie's abdomen.  Have a great Sunday!

BLinthedesert

Have a wonderful visit with your son and daughter-in-law SB.

And all you may ladies -- have a great SE free week!!  It is hot here, but it always is hot here in the summer.  It is actually "cooler" than usual - while many of you are hotter than usual.  It has rained a lot this summer (our "monsoons" are quite spectacular - dry washes flood and it pours so hard you can't even drive through sometimes!).   

mckenna

good morning, hope everyone is doing well

bl,glad you are having a cooler summer, i think we have absorbed all your heat it has actually been quite miserable here most of the summer over 100 degrees how is the "asthma" for lack of a better word?

sb, hope you had a nice visit with son, dil and little peanut!  how is the skin, all healed yet?

had my 6 week rad follow up this am.  the np is stumped and really cannot figure out why i have edema especially when i had no lymph nodes removed.  so she is sending me to a lymhadema specialist so i can stump them waiting to hear back as to when my appt is. 

this weekend is my kid free mom's weekend in chicago, i have been waiting for this since before i was even diagnosed, i cannot wait!!!!  hope everyone has a great rest of the week and a great weekend.

jittersmom

has anyone had a itcy boob since radiation? I have my followup in 2 weeks kinda nervous!

julz4

Jitters I'm still have 10 more treatments to go & am itching some times more than others!  We have another that just posted at the July Rads that she is still having problems with itching.  I think she is over 2 weeks out from finishing.  For some it takes longer to heal than others.  Hopefully it's nothing more!  I hope the follow up goes well....yes I imagine it's gonna be nerve racking!  I still have a little bit to go before I'm at that point! 

BLinthedesert

Jitters, mine doesn't really itch anymore but I get these shooting pains sometimes ... worse than after the lumpectomy actually.  I have heard the pain is normal.  However, I also am having rib/chest pain outside of my boob area - along with the shortness of breath and I am a little frustrated (and hoping it is not some sort of inflammation in either the pluera around the lungs or intercostal muscles).  But the shooting aches are not all that bad (and neither is the shorness-of-breath if I wasn't trying to run) -- I still feel pretty lucky to have avoided serious adverse events -- and sending hugs to you ladies still struggling!!!

 I have my first follow-up with my RO tomorrow. 

Miss talking to you all every day -- but hoping you are all doing well and that is why you aren't here ;-)

Hi Julz -- 10 more -- yippee!!!! 

sbelizabeth

Hi, all.  I'm just back from the MO where I tried to get my first follow-up chemo and, #1 my white count was too low, and #2 she's still horrified by the sight of the sloooooowly healing radiation burn.  So no chemo for another week, at least, which is just dandy with me. 

The wound on my back is still open and oozing, so she's sending me to a wound care specialist.  This sounds like a good idea that should have taken place about six weeks ago, but I'm not complaining. 

It has been hot hot hot here, and even worse out in Loma Linda where we visited our son and his wife over the weekend.  But it was a nice time inside with the air conditioner blasting.  What did the pioneers do? 

BL, I hope your shortness of breath resolves very soon.  Mckenna, I wish I knew of a way you could wring yourself out.  Julz, just 10 more!  Yay!

Happy Hump Day (Wednesday), everyone!

BLinthedesert

SB -- so does this mean you will be getting bariatric treatment?  Do you think the white count is because of the radiation burn?

Welcome back, I hope you  had a nice visit - hot as it was.   I think the pioneers stunk, and I mean bad ;-)

sbelizabeth

Hi, BL.  No, I think the wound specialist will work with me to find a dressing that has healing properties, and to find a way to keep it on!  The burn is under my arm, toward the back, and just isn't in a good spot for a dressing to stick.  I suggested the Mepilex dressing you'd sent me to the radiation oncologist, but he isn't the wound specialist, so we'll see.

I think the white count is on the low side because of the recent radiation.  It's just taking a while to climb back up there.

How's the running and the shortness of breath?

mckenna

sb, so sorry you still have wounds, i am sure once your white counts improve you will be able to heal quicker. 

jitters, my skin is itchy too, i did not even ask the ro because i thought it was from the edema???  now i am wondering.  i am bad about continuiing to use lotion, i need to make sure i use it nightly.  ro said my boob has not even begun to shrink and that my plan of new boobs for my 40th might be too early.  she really wants me to wait for 2 years post rads so that would be the summer of 2014 rather than the spring and i don't want more surgery in the summer so i may wait till the fall. 

have my first pt appointment on the 23rd, anxious to hear what she has to say.

the count down to my kid free weekend is on, this time tomorrow i will be on the road!!  hope everyone has a nice weekend.

Neeners815

Hi ladies.  I go for my follow-up next Tuesday.  My winking nipple is still peely, and I have some weird chest acne sorta stuff that I had during rads, but other than that it's OK.  I get those sharp pains sometimes, too.  I also occasionally get the shortness of breath, but I don't run - heh.  I haven't gone back on the tamoxifen yet because they're not sure what exactly was causing the skipping.  My BS is OK with me not going back on it, but I need to think about it more and see my regular doctor again since my heart in general is fine and I haven't had the issue since I went off the medicine, really.

SB sorry to hear about your wounds.  Yikes!  How much more chemo do you have to have?  Will definitely be thinking of you!

BL I miss talking every day, too!  Glad you had a nice time in San Diego.  So sorry about the shortness of breath.  I tend to feel a bit panicky when I get that (only once in a while).  I am sure the higher altitude makes it more difficult, as well.

Julz - you're almost to single digits!  It flies by after that, I think.  I always did the percentages every time, too "oh, I'm 66% done!" and saw how they all added up.  Glad it's over.  Will toast when you're done, too!

McKenna - have a great kid-free weekend!   

This weekend we're going to the 'burbs to hang out with some friends over night. August is a busy month for us, which is nice.  It finally feels like a real summer for me! 

Here's a sort of random story.  The other night I woke up in the middle of the night because a cat had jumped on my head while I was sleeping.  The same cat also jumped on hubby's hip and woke him up.  It hurt when the cat jumped on me, but I fell back asleep.  The next morning I got up and immediately went and started working (I work from home).  My hubby gave me a kiss goodbye and left for work. I eventually went to the bathroom, and found the corner of my forehead had a sizable portion dried with blood, as well as a mark on my cheek and my chin.  a) how did I fall asleep after that? b) how did hubby not notice it?  He's lucky that after cleaning it up it's easily apparent a cat got me, because when it was all dried it looked like he clocked me in the middle of the night.  I asked him how he possibly didn't see that, and he said he kissed the other side of my face.  Ooooohkay.  Men aren't all that observant sometimes, are they?  Also?  BAD CAT.  I have two cats and I actually checked under one of their claws for my skin

julz4

OUCH Neeners!  Gotta Love our DH's for their Oblivian-ess!  Sometimes I wish the observation skills would pick up on stuff when it's really needed!  Tee He!  Yes I guess I am in the single digets now as 9 to go!  Too busy coughing my head off.  I think I might have Bronchitis.  Going to my GP tomorrow asap.  After RADS that is!  Drinking lemon ginger tea & it's helping to sooth the cough.

SB I hope each day you get stronger & stronger.  Sending lots of healing vibes your way!  You have been through so much.  

Neeners815

Julz - oh no, Bronchitis!  I hope you get relief very quickly.  I can't imagine suppressing a cough through rads.  YIKES.  Big hugs.

sbelizabeth

Julz, I was coughing during my last sessions and every time I coughed, the therapist had to come into the room to be sure my position was correct. Your rads session might be very short, but if coughing is an issue, ask your doctor for some prescription strength cough syrup.  It will settle things down enough to have a quiet rads session!

The tea that I found most soothing was Good Earth Caffeine Free Original.  It's a wonderful, sweet cinnamon tea, but no sugar or artificial sweeteners. You can find it in grocery stores, and our Costco carries it, too.

Thanks for the healing vibes, everyone.  If my blood counts climb up a little and the radiation wound heals up a little more, I'll start the first of four more rounds of chemo.  It's two different drugs that my first treatments, and it's just for some added "insurance" to prevent any nasty surprises in the future.  I actually brought the research to the doctor and ASKED to do this.  What a ninny.

Neeners, have you ever seen the cartoon of the cat gently tapping his sleeping owner to wake him up, and finally gets a baseball bat and whacks him?   When the owner wakes up the cat's sitting there looking all innocent.  I'll look for that one for you, you'll love it.

Man, is it hot.  Just got back from a bike ride and it was just little me out there, everyone else was smart enough to stay inside.  Even the snakes were hiding.

Nice chatting, everyone, you guys rock! 

BLinthedesert

SB -- Simon's Cat it is awesome!!!!  

 http://www.youtube.com/watch?v=w0ffwDYo00Q&feature=relmfu

julz4

Sb I've been lucky that the cough hasn't got that bad until today.  Was able to curb it with a cough drop for the full 5 minutes I'm on the table.  As for tea...I love Green & have stayed away because of the antioxident while doing Rads.  I LOVE the Good Earth Super Green.  I've never had the other flavor I will have to look for it.  It sounds so wonderful.

BL I will have to go watch that!  

Back at you Neeners!  

This to shall pass & I know many have been through far worse.  But when you feel crappy you feel crappy! 

julz4

ROTF!!!! LOL!  Where have I been....Love the Simon & that was my first! I have 2 ankle biters as I call them.  Small Dogs not too tiny small though.  The "DIVA" that's Abby 3/4 hot dog & 1/4 Jack Russel.  She looks all Dachshund with stockier legs.  Then there is Mini the dog that's has some "Cat" tendencies....winds her way in & out between my legs.  She's 1/2 Yorkie & 1/2 Jack Russel!  A taller looking Yorkie!  Oh MY....OUR PETS & their ..... well I'm sure you could fill in the blank!

Thanks I needed that diversion tonight! 

Spokanellie

Still here, just lurking more than before. I've REALLY become interested in RV'ing, so I've been spending a lot of time over at www.WomenRV.com/forum.  (I'm "ellenw" over there. Not very imaginative.) But I've read every one of these posts as they've come in, typically on my phone when I can sneak a minute at work. 

SB, I'm really concerned about your continuing wound. When is your appointment with the wound care specialist?

mckenna - Have a terrific, kid-free time this weekend! Girlfriends - nothing better! (Well, almost nothing.  ) I look forward to read what your PT has to say.

BL - Thank you SO much for mentioning the shooting pains. I was really starting to wonder. They're not agonizing, but they make me want to grab and massage poor Bertha, and I can't always do that, depending on my environment. I have new empathy for guys who think nothing of scratching their balls in public. 

I sailed through both the 3-month MO check and the 1-month RO check - flying colors. But the RO's nurse practitioner was running so late, that after I had sat in an open-in-the-front gown in the exam room for nearly 30 minutes (talk about captive and vulnerable!), I raced through her questions in about 5 minutes because I had overbooked my morning. There really wasn't much to talk about, but in hindsight, I might have brought up the shooting pains and the continued swelling.

Meanwhile, I've exhausted my physical therapy benefit of 25 visits/year. (The LE therapist falls under that category, even though it's not a sprained ankle or anything.) Their office is trying to get an extension for me, but it hasn't come through. The visits are $160 each, so I can't take that on myself. I now have the skills to manage the condition (compression garments, range of motion exercises, light subcutaneous massage) and I know what things to avoid to prevent a flare-up. That's about all I can do. Then come Jan 1, I can go back occasionally for her to do Manual Lymphatic Drainage (MLD, a kind of light massage that's very time-consuming). It seems to help, but until I meet my deductible again, it'll be expensive! She's shown me how to do the massage, but I'm not as effective.

Wow, that was a fistful of whining for someone who's only been lurking for the last 30 days! Sorry, my friends. In reality I feel like I'm doing amazingly well - much better than I thought I'd be, thinking back to my diagnosis in February. Your support has been so encouraging, just knowing all of you are out there and going through the same things at the same time. {{{hugs!}}}

Ellen 

nancyjac

I had a sore throat for several weeks after surgery.  Nothing significant, just enough to make me feel like I needed to clear my throat all the time.  I had multiple surgeries over a 2 week period, so mine was from the tube they stick down your thoat to help you breathe will under anesthesia during surgery.

sbelizabeth

Hi, Spokanellie, nice to see you back!  RV-ing sounds like a lot of fun, and a good way to get to the beach where it's cooler than our inland ovens.  Of course, Seattle is a long drive from Spokane, but in an RV, it would be an adventure.  I've been to my lymphedema therapist a couple of times, and avoided making an appointment while I had open wounds on my front side, but now that's all healed up I think I'll go back and see her.  It feels wonderful for someone to care for that part of my body without sticking needles into it, cutting it, or burning it. 

BL, have you seen your RO for a follow-up yet?  I'm interested in what they'd have to say about the shooting pains and the shortness of breath. 

Julz, how's the bronchitis? 

We've come full circle with this big radiation wound.  I thought my MO was referring me to a wound care specialist, but that wasn't correct.  She called my RO and yesterday and asked THEM what they were doing to help heal this hole, so then of course the RO nurse calls me and asks, "How's the hole?"  Well, it's a bit smaller than it was six weeks ago, when every physician and nurse in the practice examined it, clucked over it, and had nothing to offer to promote healing or pain relief, thanks for asking.  So if my MO thinks my RO will help, she's wrong. 

Maybe I'll strike out on my own and see what "wound care specialist" is on my insurance list.  Either that or I'll just do what I've been doing for the last seven weeks, wearing my husband's tee shirts under a big blouse so the wound doesn't ooze through my clothes, and just going about life.  With no intervention except lotion that I apply throughout the day, it will eventually heal.

There's my whinging for the day, thanks for listening! Happy Friday, and have a great weekend!

Spokanellie

Katy - Any concern for infection? Your theory of just keeping on with the cream and lotion sounds good, but... I know with your nursing background, you have the knowledge to keep the area nearly sterile, but still...

Also, nice tip of the London bowler, recognizing the Olympics with your use of "whinging." I like it! Have a good weekend.

I'm working from home today , then this afternoon I'm going to see "Hope Springs" with some friends. Nice way to kick off my weekend. 

sbelizabeth

Thanks for your concern and question, Ellen.  I keep the area very clean and only touch it with clean hands, but beyond that, I don't know what I would do to prevent infection.  Fortunately it's an open area on the skin's surface, not a puncture wound, so although infection is something to avoid, it's not a high-risk thing.  Knock on wood.

A co-worker needed her laceration's stitches out today and I got to feel like a REAL nurse! 

My first haircut in nine months is scheduled for Sunday afternoon, for those of you who are starting over like me.  When it first started coming in I thought I looked like Uncle Ben.  Now I look like Grandpa Munster, with the gray wings on the side.  Or maybe an elderly Bozo.

BLinthedesert

Katy ... wow.  I can't believe the runaround they are giving you.  So, the Mediplex doesn't help with the holes??  Good luck with the haircut -- I am sure you are still beautiful!

Spokanellie, I have some friends who RV, I met flew up and met them in Anchorage one summer and then we toured Alaska.  It was a blast!  The RVing book that they had gave lists of everything you could find at all the mile markers (like, where the expresso is, very important stuff) ... it is soooo cool.  I have looked longingly at those Sprinter Vans -- they are a nice size, and easier to drive than a big RV (they have both Mercedes and Ford options: http://www.automotivedesignsandfab.com/).

So, I have to tell you guys a funny story.  I have been keeping in contact with a woman from these boards from here in Tucson.  She PM'd me and we have the same "team" (BS and RO, because she had invasive cancer and is also taking tamoxifen she also has an MO).  Well, we are meeting up next week for lunch.  After quite a few emails, it suddenly dawned on me that one of the nurses from the radiation clinic had told me about her (without her name, of course) -- mainly because she was a runner too and ran through radiation.  The story was that she lived near the clinic and would occasionally run by the clinic on her daily runs and "wave" at the clinic (sometimes with "more than one finger").  Anyway - yesterday, when I went in for my follow-up with the RO I told everyone I was meeting with this woman and they just thought it was awesome!  Such a small world!

So, my RO doesn't think the shortness-of-breath is internal or based on lung damage, mainly because it is not all the time, her belief was that if it was due to radiation it would not be intermittent.  I still have some swelling (which I don't even really notice) - and my lymph nodes are swollen near my chest.  The shooting pains are "normal" (it is true that they are similar to what I felt after my lumpectomy/biopsies) - and that the feeling that I can't get enough air in my lungs is likely because my surgery included a lot of chest wall/facia -- so the area was already inflammed, radiation makes it worse, and it is muscular.  It is true that I have had problems with both my shoulder and my side since the surgery, so I can believe this might be true.  I am going to continue to do my stretching/exercises for my shoulder, and hope that things get better.  As far as the racing goes, I might just have to modify my goals right now ... I am a fast healer, but it does take time to get all back to normal, so I think I might just have to learn to be a little more patient.

On a different note, I have been offered a really good job.  It is an industry job, which is really different from the academic job I have had since receiving my phd (13 years ago).  It is a super good opportunity, and quite frankly, a way to make a huge scientific contribution in a much shorter period of time.  The research we do in academia is important, but these sorts of industry are what fast tracks science into practice.  As an aside, this company is the company that makes the diagnostic test for HER2 - so you all know how important that is.  Decisions are hard, especially ones that will change your life, but, it is a good kind of decision to have to make.  I am very lucky.

Happy weekend ladies. 

sbelizabeth

Hi, Bonnie, what fabulous news about the job offer!  Change is always hard, especially when you're enjoying what you're doing, but the huge scientific contribution part would be enticing for me.  My decision to move away from direct patient care, even part-time, was very difficult, but in my current position I can make a difference in so many more patients' lives than just taking care of one at a time. 

The enormous accomplishment of your PhD was probably a comfortable seque into academia, and the private industry offer must feel like a challenge.  No matter what you decide and what factors are involved, you'll make the right decision.  Wow.  Best of luck.

And great news about your RO follow-up!  I am ordinarily a fast healer as well, but this radiation stuff has humbled me regarding that.  Like you, I'm being forced into patient healing, because the body has its own timetable with this stuff. 

About my hole...(giggle)...my RO's nurse said they were looking into the Mepilex, but hadn't made the decision yet to offer it for wound care.  I have researched the product and found that's it's enthusiastically recommended for radiation wounds, but my RO's office hadn't heard of it.  I'm thinking their nurse might need some updated education.  Oh, well.  Maybe I'm just being impatient, and expecting this thing to heal like road rash.  It's been seven weeks since it was at it's bright-red biggest, and it IS healing, it's just discouragingly slow.  And while it's so painful I can't sleep in any position besides carefully on my right side, so now my hips are getting sore from the unilateral pressure at night.  However, see paragraph #3.  Patience, exercise, patience. 

Have a great week.  If you need some letters of reference, we're here for you!

BLinthedesert

Katy - you can buy Mepilex online yourself. It isn't cheap, but it might be worth it?  Dratted holes ... giggle giggle.  I hope your white blood cell count is improving -- mainly I just want this last bit of chemo to be done -- so you can rest and bounce back.   I hope your sister is doing ok??  Did she ever get a second opinion?  What was her pathology?  Hugs to her (and you).

Thank you so much for the comments ... I am excited and I think I am leaning towards taking the position.  You are right about the move to academia being a comfortable route after being in school so many years ;-).  This job somehow feels more "adult" - which for an almost 50 year old is probably a good thing (he he).

Today I was able to run a very long run ... I was happy.  I also realize that it has only been 4 months since my surgery and barely 7 weeks since the end of radiation -- I think I just need to have a little more patience and enjoy the fact that I can run at all ;-); expectation is hard, you really do just hope that you can bounce right back into normalcy and it just takes time.  The more I focus on it, the more I realize that the problem really is that my chest wall is just really tight and it does not expand enough to allow me to take a deep breath when I am running ... so, I am thinking about finding a good physical therapist to work on exercising the area and getting better range of motion. 

Neeners815

BL - congrats on the job offer!  It sounds very exciting.  I read it and thought "Look at the big brain on BL!" (quote from a movie ).  And you are right - you do sort of expect yourself to jump right back into the normal routine again and it's taking it taking longer than anticipated can get frustrating.  I think we get tired of being reminded about the cancer we had (not that the scars and winking nipples aren't reminder enough, but you know what I mean).

Tomorrow I go see the RO.  Oddly I've been getting  something between a blister and acne in the same spots I had before during rads.  Ugh.  I hope this goes away soon because it's not cute.

Wednesday is my birthday and all I want is to be healthy and not paranoid thinking any little thing is cancer related.  It's amazing the levels of crazy my brain can go to sometimes.  I'm still not back on the tamoxifen.  I need to go see my regular doctor and figure out what to do, since my heart seems fine - no real episodes of fluttering for hours again since I went off the drugs.  It could be a coinky dink, but my paranoid head says no.  I'm not putting off the doctor because I'm afraid of what he'll say; I'm putting him off because I'm tired of seeing the doctor! My period is late, too, but I think the tamoxifen did that to me.  The only other time I was late was when I was going through the cancer diagnosis, and that was almost 6 months ago.  I'm trying to lose some weight, but the late period isn't helping matters.  I do feel like my mood is all over the place, if you couldn't tell from this post! 

BLinthedesert

Whoohoo, your birthday!!  Can't wait, we will have to all lift a cheer for you.  I hope your boob gets cute again soon ... bring back the winking??

I know exactly what you mean about every little being "cancer" related.  It doesn't help me move on when I have doctor visits and follow-ups scheduled every dratted week.  This week is my first follow-up mammogram, and I am not looking forward to it.  I completely expect to be given the all-clear -- but I think it may hurt.  Righty is very sensitive (like a fragile flower).  My RO said, "that nipple is taking time to heal, but we knew it got hit hard ..." --- I thought, "really, I did not even notice that my nipple was any worse than the rest of my boob?  Since it did not fall off, I thought it was doing pretty darn good" ;-).

It would not surprise me at all if tamoxifen was the root cause of your heart flutters ... either because the hormones mess with some sort of regulation (e.g., salt balance) or even hormone fluctuating stress.  I was talking with a friend of mine at the conference a couple weeks ago (we are both the same age - 49); she was telling me about how she has found that she gets stressed out about things she never used to worry about -- like traveling for the conference.   I also have found that driving causes me a lot of stress, and I never ever had any problems driving (I have lived in California and DC, way larger cities than where I live now).  I can't help but wonder if it is hormone related?   

jittersmom

I think the stress is hormone related, it feels like menapause all over again, I want to scream I worry about every little thing. Have my followup with my RO next week..my boob still itches and i agree i think that first mammogram is going to hurt! I was alos vry weepy at first with the tamoxifen

schatzi14

jittersmom....I have my first mammogram next Monday and I am terrified. I don't care if it hurts or not I just want good results!