I’m home (by Lyn)

I have more day to day info at my personal blog, but I wanted to post here that I’m home from the hospital after surgery and give an update.  I had a modified radical on my left breast, a bi-lateral on my right breast, and a full hysterectomy all at the same time on Oct. 2nd.  I wish I could say it went smoothly, and is going smoothly at home recovering, but it was tougher than we expected.  The hyster surgeon ended up spending an extra hour operating on me due to scar tissue from my c-sections that had somehow glued my uterus and bladder to each other or my insides, or something.  My bladder took the blunt force of that part of the surgery and had to leave the catheter in for 4 days to let it rest.  I was supposed to go home after 2.  Then I ended up getting a nasty bowel infection while in the hospital.  I was released on Weds. the 7th, and in the ER on Friday the 9th due to the infection getting worse.  Then Friday night my bladder started leaking (this was just this weekend) so here I am trying not to move my arms too much yet unable to use my tummy because of the bowel infection, and now my bladder LOL.  I was a sight!!!  At one point Saturday I was laughing so hysterically at how pathetic the situation was.  But lo and behold, Sunday brought some relief and I did feel a little better yesterday from all of it.  My infection is still not gone, but it is improving and I just called the doc about my bladder and he sees me tomorrow.  He told me at the appointment in a little joking matter ‘if I break it I fix it’, so I fully intend for him to fix it!  I get my right drain out this afternoon, my left is still not ready and will probably be at my appt. this Friday.  I don’t have alot to say on the emotional aspect of what I’m feeling about not having my breasts, I’ve been so consumed with all the unexpected pains to think on it much.  I’ll get there I’m sure.  I’m still in alot of pain, I heard that the mastectomy doesn’t hurt that much because they cut alot of nerves with it, but my left side does hurt the most out of all of it. When the pain ebbs, the infections are gone and my bladder is fixed, maybe I’ll be able to say it was worth having it all done together but for now I’m undecided.  My advice to anyone contemplating having such a radical surgery is this:  don’t do it the week after you finish 5 months of chemotherapy.  Give yourself a few weeks to recover from chemo first.  I’m convinced that my compromised immune system is what has made this so much harder.

On a brighter note, my pathology reports came in.  4 lymph nodes positive out of 15 and only trace ‘miniscule’ is the word the surgeon used of cancer left in the breast itself.  I have Inflammatory Breast Cancer, so it’s a little different in that it was spread all over the place as opposed to being 1 tumor.  She said there was no live cancer visible to the eye, and only under the microscope did they find the little bit they did.  It was all dead cancer/scar tissue.  She was very confident that she got it all (one plus side to having chemo the week before) and had definite clear margins.  She was thrilled as was my oncologist, and said that now I can consider myself cancer free.  Hmm… that sounds too weird yet.  Maybe after radiation and my next scan…

I will start radiation in about 3 weeks, and instead of the 6 weeks of once a day daily rads originally planned, my oncologist is suggesting a regime of twice a day rads for 3 and a half weeks.  Apparently studies are showing that it has excellent results with IBC patients.  I haven’t met with a plastic surgeon yet, nor the radiologist, I’m just trying to get through the next 2 weeks without any further setbacks.  Wish me luck.

Halfway done

I was standing in the check-out line at a clothing store this morning buying a new shirt and it hit me that this could possibly be the last time I get to shop for this body as I know it, in this size and shape.  My surgery of radical mastectomy/bi-lateral mastectomy/hysterectomy has been scheduled for October 2nd, 2009 which is less than a month away and I think I am just beginning to realize what this means.  Since my diagnosis in April ‘09 I have been consumed with staying positive in the midst of all the IBC negativity, having chemotherapy and a mirage of new drugs along with it, trying to be a normal mom to my 2 year old and now 4 year old and a decently normal wife to my husband.  I thought I was doing a good job of it all, including truly facing what I’m dealing with, except I don’t think I really knew what the surgery meant.  I think most women on this site have had a mastectomy, so I know it is fairly common and that’s what I focused on.  But the new reality of not having my breasts anymore is surreal and terrifying.   My body is going to change.  I don’t know that I am mentally or emotionally prepared for that change yet.  I admit it.  I know that I need to focus on the purpose of the surgery- to make me cancer free- and I will do that but I can’t help but be saddened at the forced changes.  I do take comfort in knowing I will have reconstruction at some point, for IBCers it isn’t right away usually and I am expecting it to be about a year out from what my doctors tell me.  I have read most of the stories on here about ‘foobs’ and the different choices everyone has made with fascination, but I realize also with distance.  I didn’t relate to it so it was easy to read.  I am blessed to have ‘met’ amazingly strong women on this site and in person who have done it before me, and it’s your stories that give me strength to at least try not to focus on my fears and instead think about the future.  I want other newbies to know that it’s OK to acknowledge our fears-and this surgery is just as scary as IBC istelf to me- but we have to try not to let them take over.  I keep picturing this time next year when reconstruction is done, when I will hopefully be finished with Herceptin every 3 weeks, and my son will be starting kindergarten.  My daughter will be 3 and a half and it will be just us at home for the first time- now that’s exciting stuff I want to be around for, and thinking of these things makes the surgery worth it.  I have 3 more chemos to go, I was supposed to have it this week but the kids got me sick and I was unable to.  Then I consider myself halfway done with treatment, which sounds pretty awesome when taking it one day at a time. 

(ps I don’t know if this post makes any sense, my brain is so weird from the new drug doc put me on last week to help with the hysterectomy hormone issues but I tried:)

Waiting and Wondering

Today I had my four month oncology check up. The weeks leading up to my appointments is a very high anxiety time for me. There always is a nagging feeling in the back of a cancer survivors mind that someday their cancer will come back. So those few weeks are very stressful for me.

When I walked through the doors today I expected to sit for 10 minuets or so and get called into the exam room. After I was sitting for sometime, the nurse came out and said there had been a patient emergency and the doctor was running an hour late. Let me tell you it is hard enough sitting in the cancer center for 15 to 20 minutes much less an hour and 20 minutes! Luckily I had use of my handy dandy blackberry and had access to the internet. I also visited with a friend who is the cancer center’s new nurse navigator. She is a really great lady and she kept my mind off my wait for a while.

The time I spent waiting by myself I was surrounded by cancer patients. Suffering from all types of cancer. Woman in wigs, men in wheelchairs, people needing oxygen to breath. I always get some interesting looks in the waiting room, sometimes I can even hear people wispering “She is so young!” to the person sitting next to them with sympathy in their eyes. People do not often thing about young people having cancer.

My check up went very well. I am healthy and my doctor is encouraged at my progress. I have been fighting through some pain lately but it seems to be my nerves reconnecting. It is pain but it means that my body is still healing from my mastectomy and reconstruction and lymph node removal. I am looking forward to the time when I have no pain at all!

Cross posted on Spruce Hill

This week

crossposted from http:/lynkelley.wordpress.com

3rd Taxol/doc appt.

Today was my 3rd Taxol treatment and doc appt.  We spent alot of time talking about the paperwork given to me during the BRCA2 test, including my official pathology and history report typed up by the doctors.  Interesting stuff.  I have a story to tell you about something I learned, but tired right now will get to it tomorrow.  I don’t really know if it’s good news, but Dr. Webster said it is possible to have both the mastectomies and the hysterectomy at the same time.  With 2 different doctors of course, but she didn’t see a problem with it.  I told her what the nurse said about the risk of infection, and she said they have done it and the risk is only minimally higher, that she would rather I get my ovaries out asap.  So it’s good it’s not 2 surgeries.  I will meet with the breast surgeon soon, and I suppose the hysterectomy doctor too.  My counts were a little bit low again, and I have to do 2 Neupogen shots.  I really dislike them but at least it’s not 4 like last time.  Dr. Webster and I talked briefly about the IBC Vaccine, that she is in contact with Dr. Salazar in Seattle- who referred me to Dr. Webster- and is communicating about the vaccine to see if I am a candidate.  She said she will definitely send me up there if I am, but it won’t be until after my treatments are done.  In a previous email from Dr. Salazar to me, she said that because I’m Her2 positive, I am a candidate.

Chemo was fine, nothing eventful except hubby and I got to visit for an hour with Sharon from www.breastfriends.com .  It’s always lovely chatting with her, but it was extra fun because dh hadn’t met her before and it turns out they have alot in common.  I also got to briefly meet Becky, Sharon’s partner and bfriends co-founder.

My Gene Test results

I was tested for the BRCA1 &2 several weeks ago via my oncologist who ordered the test .  IBC is not really known to being linked to either of them, but I have a strong family history of cancer and female cancer especially.  The doctor who oversaw the test was surprised herself, because I tested positive for the BRCA2 gene mutation.  This means that my chances- besides the IBC now- of getting ovarian/uteran/regular breast cancer in the future are higher than normal.  The bilateral on my right is no longer my choice, it is recommended- which I guess is good because insurance will pay for it.  Also recommended is a full hysterectomy.  I was really really surprised by this last part, and have not adjusted to what it means.  I guess they normally recommend just ovaries removed, but with my family history, the gene mutation, and the fact that I have IBC plus have had some suspicious paps in the past she wrote down hysterectomy and my oncologist agrees with the recommendation.  I said to someone else that with my thyroid surgery last year due to a cancer scare, both of my breasts about to be removed, and now my reproductive parts -that I’m starting to feel like the guy in the Operation game. 

I will do it all, especially since IBC has such a high recurrance rate, but at this moment I’m not feeling very great about it. 

Stage one of the new rack

(Crossposted from last week’s ThrowsLikeAGirl)

Today’s blog is not for the faint of heart or stomach, o fearless readers.   So finish your sandwich or latte and come back when it’s well digested.

You were warned. 

So Monday I went to the hospital and spent most of the day under anesthesia while my surgeons did the complete right mastectomy (pathology was clear on that by the way, yay!) and created a couple of  frankenboobs in their place.  Something I did this time around was look for as many pictures of my procedure as I could so I had a pretty good idea what to expect.  There is a thread on the Young Survival Coalition bulletin board that I highly recommend to people that is devoted to reconstruction.  Brave young women post anonymous pictures of themselves at various stages of their reconstruction so that people like me can get a better idea of what it really looks like.  I plan to post mine as well (though I forgot to take a “before” picture).  Paying it forward and all.  So basically my surgeons are very pleased with how the skin looks (I sort of think frankenlefty looks like a baseball.)  And based on the pictures I saw, my recon is right on schedule.

My chest feels pretty tight (ironically like I’m wearing a bra).  The expanders are in place and I’m pretty sure the plastic surgeon said frankenrighty is already 2/3 expanded.  I have a bazillion medicines to take and I have to admit it freaks me out a little.  I made the rookie mistake of taking 4 ibuprofen at the same time as 2 percocet.  My stomach quickly reprimanded me for that.  I have to give myself  a shot of blood thinner every day.  Which also freaks me out a bit.  Better that than clots though.

As usual, I felt like I received great care at our local hospital.  My room was huge.  Corner suite (or “isolation room” as they call it.)  Apparently word got out about what a scary patient I am.  Grins.  By Wednesday I was regularly walking laps around the cancer ward (I started calling it the Poop Loop.  Anyone who has had surgery can figure that one out.)  The hospital was testing their alarm system on Thursday.  Woo.  One time the alarm was Code Red, so I stuck my head out the door and asked the nurses if we were supposed to be walking out single file.  You can take the teacher out of the school and all…

So lots of people came to visit me at the hospital and I thank everybody who came by   I had been trying to figure out whether to put my compression sleeve back on and my physical therapist (thanks for visiting!) reminded me that I actually have 4 drains on that side right now and that my arm is probably at an all time low in terms of edema.  Which it was.  I could actually slip all the identification bands off my left arm without cutting them by Thursday.  

So I have 6 drains that I will probably have for a while.  Last time I only had 2 and I had them for weeks.  I still think it’s kind of weird that we have to drain and measure the liquid every day. 

So anyway, that’s what I’m doing, where I’ve been.  I am glad to be home.