Nothing like a little radiation in the morning

So it began today.  The first appointment was longer because 3 different people than last time stood over me and took more measurements and pictures and x-rays, moved me around into the right position and once the doc approved their whatevers, it began.  It’s quick.  You lie flat on your back on a table and a big machine is over you, zaps a time or two with noise, then moves to the side to zap my underarm/lymph node area.  Then they switch this thing above me, and put on a box that lowers very close to my body, and more zapping.  I guess this one is more superficial radiation, on the skin surface whereas the other two go right through you.  At least that’s what one tech said.   The second was faster, especially because I didn’t wash off their markings being only 4 hours apart today.  The longest part is the half hour drive to and from each time.

Tomorrow I’m there bright and early, then later in the afternoon.  I also have an oncologist appointment and my 3rd Herceptin after, right before the afternoon rad treatment.  busy day.

 

From Patti B. – New IBC Clinic opening

An email from Patti Bradfield regarding a new IBC clinic opening soon.

Hello All,

I would like to bring some very exciting news to our IBC community.  It is my pleasure to announce there will be a new IBC Clinic at Fox Chase Cancer Center in Philidelphia in approximately six months (if not sooner).

With this new clinic opening, it is also my honor to tell you that Dr. Massimo Cristofanilli will be heading up this new facility.

Yes, Dr. C is moving to the East Coast, but the Morgan Welch IBC clinic in Houston will be working closely and with the same protocols as those which have become standardized by Dr. C and his team over the last three years.

Also, In addition to his position in the department of medical oncology, Dr. Cristofanilli will be the co-director  of the Women’s Cancer Program,  He will also serve as associate director of clinical research for Fox Chase’s Cancer Center Support Grant from the National Cancer Institute.

From the Fox Chase website :   http://www.fccc.edu/news/2009/2009-11-02-cristofanilli.html

Fox Chase Cancer Center Appoints Massimo Cristofanilli, MD, FACP, Chairman of the Department of Medical Oncology (11-02-2009)
PHILADELPHIA (November 2, 2009) – Noted breast cancer clinician and researcher Massimo Cristofanilli, MD, FACP, has been appointed chairman of the department of medical oncology at Fox Chase Cancer Center and will hold the G. Morris Dorrance Jr. Endowed Chair in medical oncology. He will arrive at Fox Chase in January 2010.

Dr. Cristofanilli is very excited about this amazing opportunity and additional facility for women across the United States.

Please read the website from Fox Chase which will give you more details about this event and also more about our friend and Doctor,
Massimo Cristofanilli.

Patti

4 Weeks post-op

Last Friday was 4 weeks since surgery.  As far as the surgery goes, I’m feeling TONS better.  The hysterectomy part is basically healed I think, they tell you don’t strain yourself for 6 weeks afterwards but I have no issues or pains in that area.  My chest is healing still, I am waiting for the 6 week mark mostly because of the mastectomies.  My left side still has a dull ache, and occasionally my underarm will hurt in the lymph node area.  I read that this is pretty common as nerves come alive so I’m not worried.  I can move my left arm more and more, they must have really done a number on my arm muscles because the whole thing hurt not just where surgery was.  I would say I am on the mend, and thank God for that!  My pneumonia is clearing up from the antibiotic also.  I’m still very tired physically, not sleeping all that well but I am not taking anything to help me sleep.  I can, and probably should be, but I felt a need to let my system adjust normally without any more meds than necessary.  I will most likely have to go on something to help with the hot flashes and sleep issues soon though.  I guess I wanted to post an update because it is true, that no matter how awful you are feeling at one point, it can and will get better eventually.

I’m tattooed

Nothing sexy, just 4 little dots put there by the radiology dept.  I had my getting started session where I lied on a table with 3 people standing over me placing sticky measuring tape strategically over my chest.  I must have been working my arm enough because though it doesn’t fall all the way behind my head, I could hold it how they wanted.  That’s good because we didn’t need to reschedule.  Then they did the ct scans, took some pictures, and gave me my schedule.  I start radiation next Thursday, the first day will only be 4 hours apart.  Then Friday is my regular schedule of 8:30 a.m. and 3:30 p.m.  I also have an oncologist appt. and my 3rd Herceptin treatment that day, so I doubt I’ll have time to go home with everything happening right there.  It is also my birthday that day, I forgot all about it but the radiology gal reminded me.  I’m nervous to start treatment and anxious at the same time.  One step closer to being done done done.

Some advice

I wrote a post on www.motherswithcancer.com that I did not cross-post on my blog because it was an update of my surgery and the pathological findings, just all in one rather than spread out like here.  But I put some advice at the end of it that I didn’t include on here and now I want to reiterate that.  Several people have asked me if I regret having the hysterectomy and the double mastectomies all at the same time, especially since I did get an infection and the mess with my bladder etc.  I wasn’t sure of an answer the first time it was asked, but now that I’m 3 weeks out I can say that I don’t.  As hard as it’s been, imagine having to go back under and another 4 week recovery if I had done the two seperately.  Still risk of infection both times, so no I don’t regret having it all done together.  What I do regret- and this is through learning how much my body has taken a toll – is doing such an aggressive surgery the week after finishing 5 months of strong chemotherapy.  My immune system was not prepared for it, and it’s been one thing after another every since in just a short 3 weeks.  I now have pneumonia, yup my cold turned ugly and I’m on antibiotics so hopefully I will be on the mend soon.  One thing after another, all because my body was so beaten from the chemo and then the infection I got etc. my immune system has continuously been fighting and I am worn out.  I’ve been eating healthy, doing all the right things, it’s just one of those situations where some stuff that they tell you can go wrong but probably won’t, did go wrong and it’s taken its toll.  So no, I still don’t regret having it all done at once, but I do think a couple of weeks break between chemo and surgery would have made things easier, and I’m still paying for it.  Take it easy on yourself if you’re contemplating something similar… and make sure to be as prepared at home as you can be with food, and childcare, and finances… you don’t want to be dealing with recovery and any extra health issues that pop up and have to worry about everyday life stresses as well.  

My two cents:) 

Today’s Sunday

Sorry for the title, I couldn’t think of anything interesting.  I caught the cold/flu bug going around and have been pretty ill the last 2 days.  My kids just went to their aunt and uncle’s for the day thank goodness because I can’t talk much less yell at them lol.  I cannot wait for my immune system to get back to normal, I’m so worried it’s going to turn into pneumonia.  I’ve been eating healthy ever since i got home from the hospital, been drinking lots of juices and taking vitamin c hoping to avoid it, but it was inevitable.  All 3 of them had it last week, Ken and the kids both, I thought I was going to get a pass as I went a whole week of them being sick and me not, but now that they are better of course here I am lol.  I have to try not to give it back now, so exhausting:)    To answer a question I’ve been asked privately lots of times, I have lost about 20lbs since surgery.  You have to assume my boobs were at least 10 of that, well I don’t know if that’s true but I’m guessing, and then just not eating and being sick and eating alot healthier when I do I’m not surprised.  I’m not actively trying to lose much more though, because I want there to be enough on me to build two decent sized breasts when I have reconstruction.  I don’t want to be stuck with little B’s, or worse just enough for 1 boob when I need 2 lol.  That sounds so silly of course, but it’s true.  When I meet with the plastic surgeon I’ll be able to get a guage for how much I can lose before I hit the ‘uh oh not enough for what you want’ plateau.  I’m still going to continue to eat better and walk etc. just no serious dieting.  I’m sure some of the weight will keep coming off on it’s own now that the steroids are getting out of my system also.  It still baffles me that when you think of a cancer patient, you think of thin frail looking people and most of the people I met gained.  I ended up gaining like 13 lbs overall, even though in the beginning I lost on them.  The last 4 weeks for some reason packed it on, it’s also when my symptoms increased with the nose bleeds etc.  I don’t have those anymore thank goodness, that was awful.

Ok anyway done rambling.

The survivors page

A while ago I posted that I was going to make a survivor’s page on my blog for IBC patients 3+ years out and I had asked several people I know and got some positive responses.  This is true, I did actually get about 8 people who were excited about it, and even thought about making a whole other blog/site just for IBC survivors.  But I was surprised by who wasn’t interested.  I know of many women I’ve met in various sites who are 8-15 years out without recurrance, they don’t have a personal blog or story anywhere, and they had no interest in posting about their experiences.  I was like why, why wouldn’t you want to give hope and encouragement to those of us who are just beginning this awful journey.  A fellow mom and IBC survivor who is 2+ years out said it this way, the answer she found is something along the lines of ‘they don’t want to tempt the devil’.  Like if they talk about it, if they keep it ongoing, it could bring it back etc.  I guess I can see that, especially from the older generation, but it was discouraging.  Those people are the ones I want to hear about, I want to hear what kind of treatments they received 15-20 years ago that enabled them to be here today.  So though 8 people is a decent response to start a survivor’s page, I’m not going to pursue it right now.  I may at some point in the future if there isn’t one already, create a site that’s seperate from my personal blog and just for IBC survivors.  Hopefully in 5 to 10 years, I will be here to create something like that.   One thing I’ve found is each IBC patient is different, and depending on positive or negative statuses and doctors and countries – my friend Sue lives in Canada- each treatment plan is different accordingly.  So we need to hear everyone’s different story, because it is rare that 2 are exactly alike. 

For now, go to www.motherswithcancer.com  and click on IBC tab to see the different moms who have or had IBC and are now survivors.  There are links to their personal blogs also.  Another site is www.breastcancer.org  with a pretty good IBC forum, there is even a page that lists survivors, but it’s just their names, no links to blogs or info.  That doesn’t really help me, but it’s there if you want to see.  www.eraseibc.com  is also there to talk to people that are survivors and ask questions, or just read answers to questions from seasoned IBCers.  Again, not too many links to blogs or stories, but lots of info to have.

Being Her-2 positive is a rarer form of breast cancer, as is being Triple Negative.  I didn’t think would ever learn so much about both types, but my friend Lori was diagnosed with IBC a couple of weeks after me, and while I’m Her-2 positive, she is Triple Negative.  We have the same doctors and surgeons, yet our treatment has become so different.  So if you stumbled upon my site in a random search and happen to be Triple Negative, she is the one you wanna chat with.  And if you just want to support those of us in the battle or learn something new, go give her some support and love at http://lorimiller.wordpress.com .   If you live in Canada and speak French- I love that she speaks both French and English I wish I could hear her accent in person:), go visit my friend Sue at http://rose-au-vent.blogspot.com/  she is Her-2 positive, but had a much different reaction than I did and also different findings with her surgery.  She is now doing radiation once a day. 

I never would have known I had IBC if not for the internet, I was misdiagnosed with IDC- Infiltrating Ductal Carcinoma- but I knew by researching online that that was wrong, and because of the internet I found my way to my oncologist and the surgical/radiation team that I have now, and also met the wonderful people I have all thanks to being online.  So don’t feel like your story isn’t that important, I assure you it is, it might help save a life.

The Radiologist

I met with Dr. Devetta yesterday for the first time.  Usually patients meet with them much earlier, but circumstances kept putting it off.  No surprise that I like him very much.  He’s direct but friendly, and he has empathy which not everyone has, sometimes especially doctors.  One thing that made my stomach queasy was he said a couple of times ‘your disease is very aggressive’.  I know that already obviously, but that’s what makes my oncologist Devon special in that she never highlighted that in our appointments, she always stayed on the side of ‘we’re going for a cure’.  Dr. Devetta’s take on my treatment plan was ‘your disease is very aggressive, so our treatment needs to be very aggressive.’  This sparked a diagram tutorial on his whiteboard where he went over my particular cancer and areas it was in detail from beginning to end of surgery.  He then described in detail how radiation works, how it is effective, and made it clear that without radiation the chances of IBC coming back were 40%, and with radiation about 10%.  I of course hope to reduce that further with the aggressive surgery I had (my cancer was estrogen positive, so taking my ovaries out took away some of the fuel, the driving force) and the herceptin I take for a year will reduce it also.  Because my disease, IBC, is so aggressive he suggested a radiation treatment plan of twice a day instead of once a day, because he can give a higher dose each day by lesser doses each treatment.  There are studies being shown that this method has a higher success rate among IBC patients- older or younger.  I had heard this already, but thought it would also lessen my treatment time overall.  Not so.  It will still be 5 and a half to 6 and a half weeks long!  It will depend on how he thinks I’m responding, handlint it I guess.  I was all for it when I thought it was just 3 weeks, but 5 to 6 weeks twice a day – every 6 hours – is alot.  I’m going to do it, because as he said ‘my disease is aggressive’ and we want to be as aggressive in treating it.  I will just keep telling myself this is the last hard actual treatment I have to do for hopefully a long, long time. 

I have to exercise like mad this week to get my flexibility back before Thursday when I have my mock radiation, which is where they map out where the lasers need to be etc.  The pain is much less, and I’ve been working on it more and more.  I should start actual treatment in 2 weeks.

Don’t look down

I’ve been asked several times how I’m coping with the loss of my breasts, or heard comments like ‘you must be so emotional over the surgery’ and truthfully I didn’t have alot to say on it.  I have been so preoccupied with the pain, the infection and the bladder stuff that I haven’t given the fact of my breasts being gone much thought.  I also haven’t looked at the area much either, I think avoidance is a good word to use.  But today I looked down.  Let me tell you, anyone who unfortunately will have this surgery without immediate reconstruction like myself, it is not pretty.  Especially having had large breasts, it’s even more not pretty.  Instead of a straight incision line, it’s kind of lumpy especially on the bi-lateral side.  And prepare yourself for the shock of looking down and instead of seeing your breasts or bandages, it’s just slashes and wounds.  I didn’t look in the mirror or anything, just looked down and the picture is not encouraging.  Am I happy that I don’t have cancer anymore?  Sure… but I’m not sure it’s enough to make what’s happened to my body OK.  Maybe the women who have reconstruction at the same time as their mastectomies do have it a little easier in that they don’t see this flat, lumpy wound across their chest.  Still, the reaction wasn’t emotional in that I was upset my breasts are gone… I know mentally that they are gone for a good reason.  My immediate reaction was ‘dear lord I’m going to have to have reconstruction’.  There might have been a teeny tiny part of me that thought, there are lots of women who don’t have reconstruction and they are happy.  But I know I can’t leave these lumpy weird scars across my chest and never look down again for the rest of my life.  So I guess I’m definitely having reconstruction.  Blah.  Another surgery, more pain, more tubes, more risk of infection yuck yuck yuck.  They could probably fix the appearance with just implants, but I know my skin will be burnt from radiation which makes that option harder so by reasoning, I know I will most likely have a Tram Flap, or the DIEP flap option where they take fat and skin from the belly or back to rebuild the breasts.  The only upside to this is you get a tummy tuck with it.  The downside is it’s a big surgery, and I just had a big surgery.  Yet I can’t look at myself… so I guess I’ll just have to close my eyes and jump when the time comes for it because thinking about it too much makes my stomach hurt and chest panic.  Hopefully this will be the last large surgery I will have for a long, long time.  Forever would be better:)

A little relief

This is the first morning I’ve woken up without stabbing pain in my chest.  It’s taken down a level to a dull heavy pain, like someone is pulling on my skin or something rather than jabbing a hot poker in me.  I’ve been taking a different pain pill, and much less than in the beginning.  I think I’ll try to get through the day with minimum pain pills.  I have been putting an ice pack for about an hour a day on the area to help with pain and swelling also.  I thought something was wrong because it still hurt so much 2 weeks later, but was assured ‘you had a very large surgery, it’s going to take time’.  My friend Sue in Canada has been emailing me about doing arm exercises, she keeps telling me I should be doing them.  I couldn’t even move my arms a week ago, plus the doctors never told me anything about it.  But she has all these forms and pictures on ‘wall walking’ that they gave her when she had her surgery so she scanned them and sent them to me.  My right side, the side with the bi-lateral, feels fine.  It’s felt pretty good since I got home actually and every day naturally I could move it more and more, and Iuse it dominantly right now which is weird for me as I’m a lefty.  But my left side is so sensitive still, it hurts if I even raise it shoulder level.  So I promised her I would try the exercises today.  I’m just thrilled I can see some improvement in the pain department.

On a lighter note, I think my husband has gotten a lesson over the last 2 weeks about just how much I do around here.  I was teasing him this morning that he’s not a great laundress either, as i was teasing him about not being a great housekeeper the other day.  This place is a disaster area lol.  The kitchen has dishes piled, the front room was filled with toys and papers, i don’t even want to talk about our bedrooms.  WOW.  I was kind of annoyed with him over the last week that he hasn’t done better, but then he got a nasty cold- and still has it- and I have to admit that watching him run around in the morning trying to find the kids clean clothes to wear, do breakfast, wash them up, etc. all on his own is pretty humorous.  I think he knows now, that it might seem like I wasn’t doing much while on chemo- but I definitely was.  And i had Sinclaire home every day with me except chemo day, she’s only been in daycare full-time the last 2 weeks since my surgery.  I mean I love my husband, he’s good at taking care of us but I know he didn’t fully appreciate that I got up with them in the morning every morning regardless of how I was feeling, got them food and dressed.  I think when I do my reconstruction we’ll have to hire a nanny or housekeeper a couple days a week because it’s only been 2 weeks and he’s done LOL.  I’m sure all moms and heck anyone who’s married can relate!  Score one for us:)