Friday, April 22, 2011

Life Moving Forward: A Year Later

Today (April 23, 2011) is my year anniversary from having my prophylactic double mastectomy with reconstruction. It is the day I took charge of my own future by removing healthy breast tissue before cancer could slither its sneaky, over-replicating cells into my mutated tissues. I do not regret my decision. Has it been the easiest year? No. Three surgeries in less than a year is a lot to put your body through, not to mention your emotional and psychological well-being. I have had my ups and downs this past year – as my blog clearly reflects. I had my worries prior to surgery. I wrote letters to my boys, just in case (that was not easy!). I had pain and fear directly following my surgeries, especially the mastectomy. I even had “boob envy” when I had the expanders in and they were so uneven I couldn’t even wear a regular old t-shirt! However, I also have had immense relief. I don’t worry anymore if today is the day I am going to find a lump or worry that I missing “IT” because I just don’t know how to perform a self-exam correctly. I have had little wins, like being able to brush my own hair again, or get a shower on my own. Or get stitches out and drains removed. I’ve had emotional wins (see One Sweet Day), when I didn’t tear up or feel sad when I heard the song “One Sweet Day” which was previously enveloped in heartbreaking emotions for me. I have tremendous gratitude to my husband, family and friends for the support and love they have given me selflessly and continuously.

And now, 1 year later, I am almost 7 weeks post revision surgery. “The girls” have better placement overall and look natural. But gravity is starting to claw at these implants too, as my plastic surgeon (PS) said would happen. The scar underneath lefty is already almost a centimeter from its starting position. That worries me, but I am trying to keep optimistic! I don’t have that constant tightness that comes along for the ride after each surgery to constantly remind me that I am not “normal.” My PS had given me the a-okay to start jogging, lifting, etc a bit ago – so the exercising has resumed. I am able to look back on this past year and smile. I made a choice, granted the choices I had to choose from were crappy, but that cannot be changed. I still feel today, like I chose the right path for me and my family. I am relieved to not have to worry about when I am going to get breast cancer. I never actually felt like it was an if I get cancer. I always felt like I was just waiting around to find it. (I do still have a small risk because some cells were left behind the nipples and probably a few sneaky cells here and there, but overall, compared to ~87%, it’s well worth the reduced risk!). I am not saying all is perfect and hunky-dory. I still have emotional ups and downs. But I don’t question my decision nor do I wish I hadn’t had the surgeries.

Last April, before my mastectomy surgery, I posted a poem I had written in a college poetry class. What if, was about what my Mother went through, but as if it was me having to go through it. When I took that class (now I am thankful it was an elective I was able to choose!) it was about 2 ½ years from my Mother’s death and I still hadn’t really worked through my grief. That class was extremely helpful to me to get my pain out in words, just as this blog has been. I wanted to share another one of those poems today. Fair warning – it’s not a happy, smiley poem. It makes me sad to think about how broken my heart was to be able to write such a dark, grief-stricken poem. I am still not 100%, because how can you ever go back to a full heart when you lose your Mother. But I am in a much better place now and have been given the opportunity to not have to go through what my Mother did or put my family through the heartbreak and loss that I have.


A gray haze covers me like a blanket,
padding my round shoulders
as if preparing me for an intense impact.
I am alone.
I am encased in solid blackness.

Each step my foot hammers to the ground
is as loud as a whisper;
a whisper like the soft whimpering of my heart.
The struggle is hilly like the mouth of a crimping iron.
Following every battle my mother wins, there is another

gnawing at the shins of the one just defeated.
The chemotherapies weakening every ounce of her strength
as the cancer devours the length of her body.
At times the heavy haze will release me,
even as the cancer still hides amongst her healthy cells.

But the grayness always comes back
to seize me and pull me to my deepest sadness.
I keep pushing myself because there must
be a brighter side,
a side brighter than this cold twisting tunnel of

emptiness I slide slowly through.

And yet…
A flash of hope!
I run toward this light of hope,
my feet suddenly clouds of dust.
The closer I get, the dimmer the light,

and then it is gone…
gone like a mirage of water
in the desert summer,
the relief has vanished.

“The cancer has spread to your lungs,” the doctor tells us
as the room begins spinning, everything blurry around me.
“I am afraid there is nothing else we can do.”
These horrible words crash down on me

like a hammer to a nail.
But I am stubborn and optimistic.
Words in my ears ringing over and over,
“She may not live much longer.”

The machine assists her breathing now,
her lungs are filling each second with
killer cancerous cells.
“I love you, Mom,” I softly whisper in her ear as she lies in bed.
She squeezes my hand in return,

too weak to speak those three powerful words
that I am longing to hear one last time.
I lay next to her watching her chest for movement,
the split second for it to expand upwards lasts a lifetime.
Relief floods me, as I sigh deeply thankful for another second with
my Mother, my role model, my best friend.

“It’s okay to let go now, you have fought so hard, so long.”
These powerful words flow full of fear and love to my mother’s ear.
“We know you don’t want to leave us, but you don’t have to suffer any more.”
Surprised at myself for saying something I had been denying, my throat
swells up, lip quivering, entire body trembling.

Knees bounce to the cold black concrete,
tears wildly race down my cheeks,
down my face,

and pounce fiercely at the ground.
Reality smacks me in the face
as I see her chest move with the breath of life
one last time,
one last breath.

I am engulfed in silence.

I kiss her cheek as the warmth of her body
escapes, like steam from a volcano.
I crawl, dragging myself across the sharp blades of

I feel truly blessed to have been given a choice, an opportunity that my Mom wasn’t offered. Obviously, her struggles, fights, and death have had an everlasting scar on my heart. It is something that molded who I am today and maybe it is what gave me the courage and strength to say, “YES! I choose to fight! I will not let this BRCA mutation destroy another generation of my family.” Life is moving forward with new hope and optimism.

Until next time, here is to my Mother’s strength, informed decisions, and hope. :)

Tuesday, April 19, 2011

Positive Update

So, I just posted my few weeks following my revision surgery because I didn’t get it posted before we left on vacation. Now at almost 6 weeks post-op, I wanted to give an update of how things have been since then.

First, I am pretty sure I have almost all of my energy back! I haven’t been feeling anywhere near as tired as those first couple weeks. I wish I could honestly say no more naps, however, …oops! For the first time in over a year, my body’s defenses let down and I got whatever bug is going around. First, I woke up barely being able to talk, which lasted for almost a week. Then that turned into a lovely sinus infection (while we were on vacation!) and a cough. Antibiotics quickly helped with the sinus infection, but I still have a cough. Needless to say, over our vacation I took a few naps just because of how crummy I was feeling. Who knows?! I could have been tired due to my surgery and whatever buggy I caught! Either way, I am now feeling pretty good!

I have been lifting more and more. I held off on heavy lifting for as long as I could because I really wanted the internal stitches encompassing the pocket to heal and remain put this time around. I don’t know what caused the pockets to disappear following the exchange surgery, but I was not taking any chances. So, until I had to load up the suitcases into the car for our vacation (hubby was on business!), I hadn’t been doing too much strenuous lifting. Now I’m pretty much back to the norm – carrying several grocery bags at one time, lugging the folded laundry upstairs, picking up one of the boys to place them in a cart, etc.

In between the exchange and revision surgeries, I had explained briefly how having the implants under the chest wall muscle deformed the implants with certain movements (see post). As, I stated previously, I know that was probably something only I was aware of, but it still really bothered me. I have noticed following this surgery that there is much less deformity during those same movements. Maybe it was due to the fact that the implants had fallen out of their pockets before the revision surgery and there was the ability for movement of the implant and deformity of the surrounding skin? No matter what the reason, I am very happy to not be seeing that so much now! Well, at least to a much lesser extent.

Last week I had another post-op appointment. It went really well! I still have a small area (where it popped open before, see post) underneath the right breast that is not completely healed. It is still about the size of the tip of a pencil eraser, so not too bad. Also, on the left side underneath there is a small area that still hasn’t finished healing either. My plastic surgeon (PS) said that it was probably an abscess where a suture was. She figured it would take at least several more weeks or a month or more for everything to finally be fully healed. It’s weird how if you get a cut or something fairly superficial, your body normally closes up the wound and heals pretty quickly. Actually, the majority of my incisions healed up very quickly. However, there are a few times now after being cut open 3 separate times in one year my body has just taken its sweet time finishing the job. Very soon I should be healed with no open “wounds” and hopefully done with surgeries (at least until it’s the ovaries’ turns).

So far, the placement of the implants is great and I am pretty sure they still look natural. Thank you to my PS, who has done an outstanding job keeping them looking as natural as is possible in these circumstances! As a reminder to those who are new to my blog, last April, my breast surgeon removed all of my breast tissue from my collar bone down to underneath each breast. Then my PS placed expanders, followed by implants, underneath the chest wall muscle. So needless to say, there really isn’t much for her to work with. If the implants do not stay in their new “homes” I will have foobs that go down to my waist, like before my revision surgery. (Okay, that is a little bit of an exaggeration, but you get my point!) And if my PS had made the pockets too tight, my foobs would be very round and not look natural. She has done a great job though. I am fairly certain they look pretty normal to the casual observer. Although this could just be wishful thinking or the fact that this is my new “normal” and I am actually starting to get used to it! My PS did say there will probably still be some dropping due to gravity, but I am going to try to wear very supportive bras and still wear a light one at night to help them stay as close to where they are as possible!

At the end of the appointment my PS decided to take pictures. (I can’t remember if I’ve mentioned this before, but right before the mastectomy and in between the other two surgeries, they took pictures from different angles so they would have the progression of the results.) I was pretty happy about that just because that meant she felt we were at the end. At least complete enough for a (somewhat) final picture. Additionally, she made my day when she said she didn’t want to see me again for 3 MONTHS!! Yes, I said months! That is the longest I’ve gone without seeing her for about a year and a half, maybe longer due to all of the preparation, decisions and appointments prior to the mastectomy! I was thrilled! Even the girl making my next appointment commented, “Wow! Three months!” My PS said 3 months, then after that 6 months and then only once a year! But of course if I have any issues I can see her earlier. It may seem weird to be so excited about that, but it makes me feel like the whole process is coming to a close. And that feels WONDERFUL!! :)

Until next time, here’s to the return of energy, accepting a new norm and silicone where it should be! :)

Thursday, April 14, 2011

Post-Revision Surgery Update

Sorry for the delayed posting! I had this post mostly typed up and then I got caught up getting the family prepared for a 1 ½ week vacation and left on vacation! Below is information regarding the first couple of weeks following my revision surgery.

Here's an overview of the week of my surgery (Tuesday, March 8). I only took Vicodin for the first couple days following surgery and even then I only took 2 or 3 a day. On Thursday morning (2 days after my surgery) I had taken a Vicodin, but still had a pretty bad headache. I remembered I had ibuprofen from one of the earlier surgeries, so I took that and not only did my headache go away, but it actually seemed to help with the tightness and soreness better than the Vicodin. Go figure! My stupid body can’t handle strong drugs, like, morphine or dilaudid, and the Vicodin never really gets rid of my pain. I think it just takes a bit of the edge off the pain and makes me feel a little fuzzy headed. So, from Thursday afternoon on I stopped taking the Vicodin and started taking Ibuprofen. Additionally, the anti-nausea patch (transdermal-scopolamine) made my head fuzzy too; especially my eyes. When I tried to read something, a clock, a book, something on the t.v., my eyes just could not focus and everything was pretty fuzzy. I was supposed to leave the patch on for 72 hours, so I removed it Friday morning. It took awhile for the effect to wear off, but eventually it was much better. So, by taking that off and stopping the Vicodin I was starting to feel much less foggy.
Saturday I got worn out just by sitting at the park watching the boys play with their cousins. Pathetic, huh? Sunday I was still trying to get past the anesthesia fog and tiredness. Just sitting through church service wore me out! I still took a nap and I was still very tight, sore and had minimal pain. My sweet husband did so much on Sunday to make as little work for me to have to do when he went back to work on Monday. He said he wanted to get as much done as he could because he wouldn’t be here to help and he knew it would be tiring for me to just get back to some of the normal things like driving, dropping and picking up the boys, making everyone’s meals, regular cleaning up after the boys, helping with homework (plus working on a science fair project), etc. Plus, my nephews were in town staying with my dad and we had them spend the night Monday, so they could play with the boys. So even though I had 4 boys at the house ages 9, 7, 6 and 4, I did pretty well on Monday. My dad was sweet and took the boys for a little during the afternoon so I could take a nap and rest a bit.

By Tuesday (1 week after my surgery), things really turned. I woke up pretty tired on Tuesday morning, but after making the boys muffins for breakfast (pretty big feat actually! It’s harder to grab things from the cabinets, pour and stir then you think!), having a cup of coffee and taking a nice hot shower, I was actually feeling really good! I was quite a bit more mobile and I was feeling happy with the placement of everything following surgery. After my exchange surgery in August, right away I remember not being happy with placement. The implants already seemed a bit low, not to mention being smaller than my natural breasts. Needless to say, it was a bit frustrating. On Tuesday, however, I was relieved that this surgery seemed to fix the problems. They will still be smaller than my natural breasts, but I think now that they are placed where they’re supposed to be they look very similar to how my natural breasts did with a bra. The scars aren’t bad. As expected, there is still a scar underneath each breast. However, she also made a small vertical incision from each nipple down to the original incision. This was to get rid of extra skin due to all of the stretching when the pockets disappeared after the last surgery. Also, in order to tighten things up inside to make sure the pockets stay secure this time around, there are a couple folds and puckers of my skin to the sides of my breasts. My surgeon felt a little bad because of those, but I told her they didn’t bother me. I would much rather have a few folds and imperfections and have everything stay where it is this time. I would prefer to not have another surgery. I had my appointment that day with my plastic surgeon (PS) and she said everything was healing well, so she removed my external sutures! That was nice because they are kind of itchy and a bit uncomfortable.

Wednesday my hubby had to leave town again. Just for three days, so not too bad. My right side underneath was bothering me a bit and I noticed my PS had left a suture. It was directly in the middle on the underneath incision right where the vertical incision meets. I didn’t remember her saying she was going to leave one, so I figured it was accidentally. That area was a bit more achy during the day and in the afternoon I noticed right above that suture on the vertical incision the skin had pulled apart and was gaping slightly open. Because it is on the underneath area of my breast I could only see it with a smaller mirror and it was really difficult to tell how much it was open and if it was bad or not. It oozed a little blood color at first and then a light red-pink. I decided to call it safe and called my PS’s office, but it was already almost 5. They made me an appointment for the next morning. I had placed a butterfly band-aid over that part to be safe and make myself feel like something was holding it together. If I’m being honest I worried myself a little. The actual opening wasn’t a very large portion, but it was right on the part of my breast where there is the most pressure and weight from the implant. So, I started to worry about it splitting open more and causing problems. However, Thursday morning it already looked much better. I’m pretty sure the nurse who saw me probably thought I was being paranoid, but I just couldn’t tell how bad it was by myself!

Thursday to Thursday (March 17-24), was getting back into the swing of things. I was feeling a lot better, but still got tired and worn out fairly easily. I had sharp twinges and pain when I tried to move in certain directions, but there was not a constant tightness as there was initially after the surgery. It was strange to forget my “constraints” and reach my arm in a specific way and feel sudden, sharp pain. These were mostly from the right side where the more prominent fold is. I believe the pain was from where the internal stitches are and I just had to work with it and stretch it out over time. I was still being careful on heavy lifting because I really didn’t want to ruin anything. I didn’t want to assume I could lift or push/pull something and then affect the pockets or sutures, so I was playing it safe. Better safe than sorry, right?

Well, that’s a quick update for the couple of weeks following my revision surgery. I will post again very soon with a more recent update. Thanks for hanging in there for this long detailed post! :)

Until next time, here’s to naps, regaining energy and progressive healing. :)