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.

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

The appointment

As I stepped through the door, I remembered.

A single pale face looked up at me from the bench by the door, worry lines drawn from his forehead clear across his scalp. Another man next to him bent over, staring at his shoes, oblivious to the drama unfolding further in, where tension swirled round in a cloud of worry and mothers and fathers were transformed into patients and caregivers. Where a young woman sat, quietly, hands folded in her lap, patiently waiting to hear what the next six months would hold. A grandmother sat with her knitting, paused as if time had stopped while she waited to hear if she would be next. Older women in wheelchairs and old men with oxygen tanks shared space with a pair of thin Asian women and an outspoken Baba, asking everyone where the nurse was and why she hadn’t been seen yet. She had been there for over an hour, you know, she reminded her neighbors, she was there when they arrived, remember? And everyone else had been called, and yet there she sat.

There they all sat, waiting to be called, to learn their fate.

I dutifully took my seat, between a swollen woman in a bright purple
bandana and a gaunt girl-child wrapped in her grandmother’s shawl. I
too had been swollen, been weak, been bald, and been pricked so full
of holes they couldn’t find a vein. I too had been afraid, uncertain,
determined, and fierce as I fought my own body, and the traitorous tumor that formed within me. I too had been quiet, and then loud, shouting from the rooftops, “Life does not end with the diagnosis!” I too wondered if perhaps my protestations were not enough. For life would never be the same, not really.

The nurse called my name. I stood up, quickly and with embarrassing
ease, to be seen by the oncologist. But as I passed my comrades-in-arms, these wounded warriors, I remembered.

(In memory of bloggers Lisa @Clusterfook, Andrea @PunkrockMommy, Manda @AlabamaPink, and One Mother With Cancer, all lost in the last 13 months. And yes, I still link to their blogs.) Cross posted at Toddler Planet.

It’s been a while……

It’s been a while since I have posted over here. I feel guilty about it, believe it or not. The fact is that I am doing really well. I am finally feeling great. My anxiety issues are gone do to a change in meds. What a difference it makes! I feel like I have my old body back too (with the exception of the fact that I have implants where my breasts used to be) I have lost a bit of weight and my clothes fit me again My hair has a style now and I am feeling good about that. I look like a normal person, no one can tell by looking at me that I am a breast cancer survivor. I am enjoying the warm weather, the weather I missed last year while recovering from my surgeries and going through chemo. I have been lazily sitting in the sun on my porch, sipping a bit of wine in the evenings and enjoying the fact that is my girls last few weeks of school. I have been volunteering at school for things I have not been able to volunteer for. I have slowly been able to clean my house again without feeling sore or nauseated by smells that make me feel sick.

I am sorry I have not been here in a while, But I am glad for the reasons!

When your self esteem takes a hit

One of the hardest part of a cancer diagnosis is the physical change in a person. For the most part, I’ve been emotionally ready for each physical difference a treatment or surgery has made to my appearance.

Last November, on the eve of my first chemotherapy treatment, I was fully aware that my hair would fall out within the next two weeks. I had on standby a bunch of hats I had knitted myself and a few head scarves that I had purchased. When the hair began to come out, I took the bull by the horns and shaved the rest of my hair off myself. As it turned out, the scarves looked pretty good on my very round head and my woolly hats came in handy on cold winter nights. I didn’t mind my bald self all that much and had fun with different colored scarves and coordinating make-up. So many people came up to me and would say “you don’t look sick at all.”

Now though I’ve gone through a different transformation. Last week I had surgery to remove all my breast tissue, both sides. Tissue expanders were implanted and will be slowly expanded over the next few weeks to form hopefully a small C cup breast. In the meantime, I’ve gone from a full C to almost nothing. And since I’ve always carried a bit of extra weight in my middle, I’m totally off balance. Add to the fact that my hair is growing back in what looks like a GRAY color and you have the perfect chemistry for bad body image 101.

I’ve literally gone from a curvy, full breasted, long curly haired women to someone I now don’t recognize. I’m looking for that boost I need to bring me back to feeling good about myself again. I may have found it.

While at the doctor’s office yesterday, my father started a conversation with one of the patients in the waiting room. She is a cancer survivor like myself, having been through the same treatments and surgeries as I have and is now ready for the second reconstruction surgery where the tissue expanders are replaced with breast implants. She then blurted out “I can’t wait for the tummy tuck ” and that’s when I found out that for an extra out of pocket fee, the plastic surgeon can perform a tummy tuck during the implant surgery.

All of a sudden I had images of myself, full breasted, flat tummy, chic new silver euro-hairstyle with a stylish wardrobe, all of which I can wear without a bra. My self image went from blah to smokin’ in a matter of seconds.

Next week, during my first expansion session, I will be meeting with my plastic surgeon to check on my post surgical body. I plan to inquire about the tummy tuck. Since I won’t have the second surgery until sometime mid-summer, I’ve got plenty of time to think about whether a tummy tuck is worth the money. Then again, with the worst year of my entire life almost behind me, maybe I owe it to myself to do something that will make me feel like a total woman again.

Cross posted at C is Not For Cookie