Update

Hi everyone! I am past 5 the 5 year mark and doing great. No evidence of disease, or recurrence. Still only 1 boob from the failed recon but it’s fine. There is life after cancer.

Because I do not have the time to dedicate to this blog and all of the comments and emails that it receives, here is my suggestion. I feel so guilty when I see a missed comment or someone waiting on a response from me, and I truly don’t have time even though I have the heart to help. For all questions about the disease, your symptoms, possible diagnosis, and just general IBC things that need an immediate response please contact someone from this list. I have chatted with people from all:

https://theibcnetwork.org/

http://www.eraseibc.org

Facebook – Inflammatory Breast Cancer support groups for the confirmed diagnoses.

I cannot ‘shut off’ comments, but I really do encourage everyone to visit these others sites for assistance and support.

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Sorry for the hiatus

I just noticed I have many comments to go through, and requests for an email or information and I want to apologize to those that I have not responded to.  I have been extremely busy with mandatory overtime at work, and family, and I have not intended to neglect anyone.  

I will try to respond soon.

Thank you for finding me and taking the time to learn a little more about IBC.

Another friend in heaven

I have never intended for my blog to be a memorial, but I do want to share the stories of women who have touched my heart, and who have lost the battle.  My dear friend Laura Mott has passed away from Inflammatory Breast Cancer.  I visited with her just a few short weeks ago in the hospital where she made me laugh for hours as she sat in the bed.  Her sense of humor was something I instantly took to, seconded by her devotion to family and friends.  Her star shined too brightly.  Information is posted here:  http://www.springerandson.com/on-line-obituary/mott-laura-elaine/

 

 

Every so often I get a great comment or email that reminds me that this little blog I did when I was struggling most matters, and also reminds me that I have a duty to update it.  It is almost Nov. 2012, and I will be turning 34 soon.  My reconstruction did indeed fail completely on the cancer side, and I am now pretty much stuck with just 1 breast for the rest of my life.  Radiation still plays a part in my skin condition, it gets red and puffy and rips open for no reason (as it did 2 days ago), then it heals and seems normal for a while.  I no longer worry if it is an IBC recurrance as it has happened so often.  I am currently still NED I believe… actually Kaiser Permanente refused my scans for the last 2 years, so there could be something brewing and I wouldn’t know, but I feel OK.  I don’t advise you to go with them if you have a choice in the matter, even if you have Added Choice as I do.  I do not think about dying so much anymore, or think about the what ifs as much.  Let me say there are a lot of phases to surviving stage IV cancer, that I try not to give myself a hard time about however I am feeling that day, and I recommend the same to everyone else.

So I am 3.5 years out from diagnosis, alive and well – notice the alive part which is much different than the first doctor had predicted- and moving forward.  I still have hard days, the hot flashes are insane and make my head feel like someone lit it on fire at least once a day, but again- notice the alive part of my update.  I had said stage IIIC, but on my medical record I found out that I actually, on some paperwork, am classified as stage IV and NED.  Really though, anything after stage IIIB is all relative.  I was going through some hard personal issues that I mentioned here, and that stuff is better too.  One thing I’ve learned… life goes on.  I often hear from other women who are finding out or experiencing some of the stuff that I did about how personal relationships change, and I think to myself ‘where were you all when I was going through it’ LOL.  You can get through anything, you are stronger than you think, and people will disappoint us when we are sick it’s just the way it is.  But you have to forgive them because unfortunately that old adage is true with cancer, unless they go through it they just can’t truly understand.  I’m mentioning it here because it’s a very common theme I come across lately.  Forgive yourself for getting angry and saying something you wouldn’t normally, and forgive them for not being able to be what you need them to.  Know that even their frustration is part of their love for you.  That’s my survival tip for the day I guess.  Life is short and we may get sick and not know where we will be in a year, but you also may be here much longer than you planned for as well 🙂

A true IBC warrior is watching over us from heaven.

I didn’t think I would take it so hard.  I didn’t know her well, but we did chat via email several times and she twitted to everyone when I had my huge surgery.  She was a flame of hope to me when I was battling because she personally reached out to me, and invited me to blog with www.motherswithcancer.com .  I find myself overwhelmed with emotion at her passing, so so sad. She was an Astrophysicist and a mommy.  Please visit her blog. 

http://toddlerplanet.wordpress.com/author/sniebur/

Doing good

I was relishing in the fact that I was able to do the treadmill relatively painless for almost an hour yesterday.  Finally!  I still have a small wound on the underside of the frankenboob- the plastic surgeon has asked me to stop calling it that but I think for the time being I will resume:)- but I’m feeling so much better than I did even a week ago.  Of course the fleeting realization that by the time I’m feeling fully good, it will be time for the next surgery and I will once again be dealing with pain and wounds, but this is my life… and I’m learning that I really can adjust to anything.  I’m even getting kind of excited at the idea of having breasts again when this is all done… me and the OGs (original gals) were pretty close, and they were pretty great if I do say so myself, but these new ones are going to stand up on their own and I will forever have erect nipples LOL.  That can be pretty hot I hear, and as a friend said, in a shirt they will look great.  When I lost my breasts, I think I was devastated because they were a part of my personality.  I didn’t realize at the time how much of a part of my personality they were of course, but I think I just deflated inside.  The steroids I was one made me blow up like a blowfish, gain weight, I was bald, then I lost my breasts and my uterus.  Yep, I’m sure I was feeling oh so sexy.  I’m guessing I put on a brave face, and did the ‘happy to be alive thing’ for the most part but it was pure hell.  Radiation was hell too, a schedule of twice a day with 2 little kids.

Edit: I didn’t really want to make this one public again, although I figured some of what I said is a common theme among women going through the same thing, so it’s public.

Healing!

I thankfully was able to have the wound vac removed on Monday.  The wound is still leaking but is so much smaller and more manageable.  Yay.  Also on the healing front, the frankenboob is looking more and more like a possible breast each day.  A lot of the redness has faded and the seams are blending a bit more, and its wound is healing also.  Some of the radiation formed these raised blister type things on the top, and they have been crusting over and peeling off revealing fresh pink skin underneath.  I know that’s a bit informative, but if you would have asked me 2 weeks ago with it all if I thought this was going to work I would have said no.  But I’m learning that with radiated skin, and my surgeon said I have the most radiation damage he’s seen in a long time, I’m guessing we can thank the twice a day for that, I just need to be patient.  Anyway, the radiated skin keeps changing, it keeps adjusting. 

The plan for now is to keep healing, and in a few weeks will have the surgery where he takes fat from my tummy and puts it in the left boob. 

Other than that I feel OK, I have mean hot flashes from the Tamoxifen throughout the day but no bone pain like last year.  The Femara was not nice to me, and I really felt like a little old lady all last year bone pain wise.  I would cry getting out of the tub, or walking for long periods… like literally cry because it hurt so much.  But now, the hot flashes are the worst of it and I barely take the Gaba Pentin anymore. 

I felt so free without the wound vac, but everytime I got up I would look for it so I didn’t yank my skin, but then would realize it’s gone!  Then I got happy all over again.  It’s amazing what we get used to. 

So I don’t know if I should post about this, but you know me, I’m going to.  I am having trouble finding a good oncologist.  I was at NW Cancer Specialists, but when my onco Devon left, was left hanging.  Noone has called me to say ‘hey how about switching to Dr. whoever is here’.  Noone has called to schedule scans, or tests, or really even just to make sure I’m alive.  So I am not going there anymore, they can kiss my cancer free a$$ as far as I’m concerned.  The other problem is that I’ve called a few places around me, if I don’t have to drive into Portland I don’t want to, and even at the Kearney Breast Center, I haven’t gotten a call back.  I said specifically that I’m an IBC gal, NED but on Tamoxifen, and I need an oncologist familiar with IBC to keep me monitored with scans, etc.  They said they would call me back… and well… nothing after a month.  I tried another place, and the same thing.  So I’m going to try another place later this week, ask around, and then maybe go to the one 2 IBC gals I know go to even though they don’t really like the doc that much.  Blech.  We need our own IBC clinic here, we need more than 1 doctor who gives a shit about their patients.  I’m not even amazed anymore at the lack of awareness of IBC from nurses and doctors, I actually just assume they don’t know what the hell I’m talking about and when one rare gem has actually heard of it, I’m impressed.  That’s the key I think, keep your expectations low, and you might get surprised.  GRRRR… so wish me luck as I continue on an oncologist hunt.  I’ll let you know if I find one worth IBC’s salt.

 

It sucks… literally

So I can’t remember the last update, but I ended up with a bacterial infection/huge cyst thing on the left back area what now feels like forever ago, and it wasn’t healing so I have had a wound vac for the last 2 weeks.  If you don’t know what this is, it’s a hose that’s inserted into the wound then attaches to a machine that sucks all the crap out and sucks the wound closed, with the goal of speeding healing and collapsing the wound.  I get to carry it around in a camera bag type of thing and sleep on the wrong side of the bed for a while.  I’m hoping to only need it another week or so.  So far no expansions are being done, nothing is being done yet as I heal.  My frankenboob is looking better!  Some of the wounds have scabbed and healed and it’s less red, and for the first time I think I can imagine a breast there.  Something was mentioned to me and I don’t know if my surgeon saw my blog, or someone told him, but I just want to clarify that that frankenboob wasn’t his fault- it was the radiation that caused the problem.  He’s a great doc and I highly recommend him.

Ok whew got that out of the way.  Maybe I’m being a baby but I feel confined with this attachment, it’s hard to clean to do things, it’s uncomfortable because my sensitivity is returning… and I’m overall miserable today.  It’s not just the cancer, it’s the mess that comes after it too.  And it’s fun with small kids… nothing like having your 4 year old yell out ‘Mom, I can see your guts’ in Target and have everyone look at you even though you hid the machine under a jacket.