Pinktober

breast cancer awarenessI don’t know how I feel about Pinktober. The whole Pink thing is weird when you get cancer. Cancer isn’t cute. It isn’t girly and it definitely isn’t sexy.  The whole “branding” of breast cancer and the pinkness is weird. I have felt a negativity towards it since I was diagnosed.

What does “Breast Cancer Awareness” really mean? I think most people are aware of how common breast cancer is. The majority of people probably have a close friend or family member who went through it.

The donation thing is weird too.  Who should you donate to? We had a friend (mom of three kids) who tragically passed away from metastatic breast cancer. After she died her husband posted on Facebook about how little is really being done to fight the disease and asked what is really happening to all the millions of dollars donated. It doesn’t go to the families fighting this thing. And very little of it goes to research to cure the disease or to help people who have Stage IV with poor prognosis.

Some may not realize that only one type of breast cancer will kill you. Metastatic Breast Cancer. That is where the majority of the research dollars should go, in my opinion. Breast cancer fundraisers are everywhere, but most of the money raised goes toward breast cancer prevention and early detection efforts. Very little of it, only 2-3%, is dedicated toward research for Stage IV, metastatic breast cancer.  Donate here for metastatic research to find an actual cure for this thing.

This place makes chemo gift bags, I think that is also a great cause to donate to.

For Pinktober this is what I think you should do. Get a mammogram. Do a breast exam. Get this app that will send you reminder texts for exams.  Call a friend who has cancer and let her know you are thinking of her. Don’t say “what can I do”…just do something. Watch her kids. Send a meal. Even just checking in with a text will mean a lot.

Who knows, maybe its just too soon. Maybe next October I will be out there in a pink tutu, running a 5K and posting pink banners on my Facebook page.

Happy Pinktober.

 

 

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Tissue Expander Exchange Surgery Recap

Exchange surgery = done! What a relief. It was pretty easy, not a lot of pain involved and I am happy with the results.

I am going to try to use this post to give detailed information about what to expect during tissue expander exchange surgery. When I did my own research, I could not find a ton of information about the surgery, so I want to try to help other women who might be preparing for it.

After my double mastectomy in June, the plastic surgeon inserted tissue expanders. The expanders are meant to stretch the skin to prepare the area for implants. As I have mentioned in earlier posts, the expanders were uncomfortable but not unbearable. I will admit I was excited to get them out. The expanders stay in for a couple of months, and then you have another surgery to exchange the expanders for implants.

I went back to Houston to have my exchange surgery at MD Anderson. It was a bummer that I had to travel, but it’s important to do this surgery with the same surgeon who started, as it is sort of a “Part 2” of the whole process.

I went in for my pre-op and that part was pretty similar to the mastectomy pre-op. Bloodwork, meeting with anesthesia team and consult with the plastic surgeon. You have to sign a lot of paperwork that detail the worst case scenarios. Bad scenarios would be infection, seromas, blood clots, etc. It’s hard to hear about all of the bad things that could happen, but I guess the doctors have to cover themselves.

The plastic surgeon threw me for a loop when he asked me if I wanted fat grafting. This was the first time he had mentioned it, so I did not feel prepared. Fat grafting is basically taking a little bit of fat from fatty areas of your body (could be stomach, thighs or stomach) and using the tissue to fill in the area around the implant. It is like liposuction. But from what I heard, they take such a small amount that you wouldn’t even notice you got liposuction (bummer!).

I have heard that the fat grafting is painful and was nervous about having two additional incisions that could get infected so I opted not to get it. I also really wanted to get home to my kids and was worried it could make the recovery longer. So I asked the surgeon if he thought it would be okay to skip the fat grafting.

I am a planner and I had not planned for fat grafting. So the idea of it really threw me. The surgeon said its more of a preventative measure to prevent possible rippling down the road. I guess my kind of implants (smooth, round) can ripple sometimes and the fat grafting helps. But he said about 60% of his patients opt not to do it and he thought he could still get a good result if I didn’t. So…I decided no fat grafting. I hope I made the right choice.

The good news is that if I decide I want it down the road or if I want any revisions whatsoever it will be covered by insurance. Pretty incredible, right?

My surgery was scheduled for 9:15am so I went in at 7 and they took my vitals, gave me an IV and went over the anesthesia, etc. The surgeon came in and drew some markings with a magic marker on my foobs…he was pretty detailed about it. I really love my doctor. In addition to his incredible medical training, he started out as a Fine Arts Major at Brown before he switched to med school. He is a sculptor. I think its so cool that he has artistic vision and approaches plastic surgery as an art.

When the OR was ready, they put some medicine in my IV to put me to sleep. It worked super fast! I was chatting with the nurses and I think I may have passed out mid-sentence. Next thing I knew, I was in recovery. I thought they had not done the surgery yet. The same exact thing happened with my mastectomy. I had no memory of being wheeled down to the operating room, and no memory of the OR at all.

The surgery took about 2 hours. The surgeon told my parents in the waiting room that everything went well and that he was “very pleased” with the results.

When I woke up, my eyes felt goopy from the vaseline-type stuff they put on it. I felt a little pain, but not bad. I started feeling sick, so they gave me some anti-nausea medication, which worked pretty quickly. They also prescribed an antibiotic (to prevent infection) and pain meds to take as needed.

I looked down at my chest and saw that they had put me in a surgical bra. It’s like a white sports bra that has velcro in the front. The nurse told me I need to wear the bra (or a similar type of sports bra) for two weeks. She gave me some juice and a snack and after about an hour of resting, they took out my IV, I put on my clothes and left in a wheelchair.

At MD Anderson, they have a hotel attached to the hospital called the Rotary House. It is run by Marriott and so nice. Definitely a great choice to stay here after a procedure..you don’t even have to go outside to get there. I was in the wheelchair all the way to my hotel room.

When I got back to the hotel I slept for about 3 hours. When I woke up I had a splitting headache and a little pain in my chest. I took my pain meds and had something to eat.

I took a peek at my new breasts and I was really surprised that they already look pretty good. They look similar in size to the expanders, but more rounded. There were no bandages, which freaks me out a little. All of the stitches are internal, and they used a surgical glue to close the incisions.

I am so nervous about getting an infection. That would be worse case scenario. Especially if it happens when I am home…because I probably would not be able to travel back to TX. Sometimes when you get an infection they have to take the implant out, etc. I have read many horror stories. But I am trying to keep things as clean as I can and follow all the post-op instructions (no bathing for 48 hours, no swimming for 6-8 weeks, etc). Sweating is also bad I guess..and since I live in FL I may have to limit outside activities and exercise for awhile.

Day 2

I woke up feeling really good. Nothing like after the mastectomy when I would wake up with burning pain and need to immediately reach for my pain pills. I had a little discomfort/pain but it kind of just feels like after you work out. I took the pain pill they prescribed anyway, just to stay on top of it.

A couple hours after I woke up I noticed that my face was red and flushed, so I checked my breasts and they were red, too. Ugh! I called the nurse and they had me come in to the clinic to take a look. They think I had a reaction to one of the medications, so they switched up my meds and gave me benadryl. The good news is that it was not an infection! They marked the area on my breast where the redness occurred and told me to keep an eye on it. If the redness were to spread or I developed a fever they told me to go the ER.

Day 3

Today the redness on my face and breasts was gone, but still a little rash on my stomach. I went in for my post-op and the nurse thinks it might just be a reaction to the antiseptic they used on my body for the surgery. The doctor said my incisions look great. He told me to wear a sports bra for support for a few weeks and to take it easy…no lifting or bouncy-type exercise for 4-6 weeks. So, since I am feeling really good, I decided to fly home! Excited to hug my kids.

Final Thoughts

I am simply amazed at how easy this whole “exchange” experience has been. Very positive. This surgery has such a different feel to it than the first one. Since its not really about the cancer, there is more of a celebratory feel to it. Celebrating getting the expanders out, being cancer-free and the added bonus of your new breasts hopefully looking perky and beautiful.

For more information about exchange surgery, go to the message boards at breastcancer.org. There is a section under the Reconstruction category called “Exchange City“.

Surgery #2

dean-johns-265011.jpgSo, on Monday I am off to MD Anderson for another surgery. I am nervous, a bit annoyed that I need surgery again and am just hoping that everything goes smoothly. Everyone says the exchange (swapping out tissue expanders for implants) is 10x easier than the mastectomy. I hope that is true.

It has been a weird week with Hurricane Irma hitting Florida. I have been so busy, I haven’t had much time to think about the surgery. When the forecasters said the storm was still a Category 5 and our area would take a direct hit, our family of five (and dog) hastily evacuated.

First, we tried to go by air. I looked up flights to all the places we had family…Chicago, Connecticut, Houston, San Francisco.  There was NOTHING. Every seat sold out..it was uncanny. So I tried smaller airports. Portland, ME, Westchester County, Providence. How about just a fun trip somewhere. Vegas? All sold out. Our only option was to drive.

We headed to the west coast, since Irma did not look like she was going to hit Tampa. Then we headed further north and west into the Panhandle, where my husband’s aunt offered us a home where we could stay. As soon as we arrived (after a loooong drive) the forecast changed. It wasn’t going to hit our home after all. It was now heading to the west coast. We tried to make the best of it by enjoying a little vacation in Panama City.

It was a weird and crazy week. In the end, I guess I am glad we left. We were going on the best information we had at the time. Although all of the hours in the car were hard, I think staying home would have been hard, too. The stress of the storm, being stuck in the house with the kids, losing power, the tornado warnings..it all sounded awful. Panama City was actually a really beautiful spot and we never really got the storm there. Just some light rain.

It was really an emotional ride. There were stretches of time when I thought that we might lose our home, that our community might be destroyed. Being on the road was also scary. We heard horror stories about people running out of gas and the terrible traffic. The whole experience was strange and made me look at the world differently. It gave me an appreciation for the life we live and all of our little conveniences we often take for granted.

So, back to the surgery. I have not been able to find a ton of information online about the Exchange Surgery so I will make sure to post about my experience here. Sometimes the anticipation and not knowing is the hardest thing.

From what I have heard, the surgery will be outpatient and no drains will be involved. Both good things! I have my pre-op Monday, surgery Tuesday and then the post-op Thursday. They sped things up since they know I don’t live in Texas…but thats a pretty nice schedule, right? I hope to be back home by the weekend. Here’s to a smooth procedure, no infections and a fond farewell to these expanders! I won’t miss them. 😉

Tissue Expanders Suck

When I had my double mastectomy, they inserted devices called tissue expanders in the areas of my chest where my breasts used to reside.  You may not have heard of tissue expanders (ahem, torture devices!). I had not heard of them before all of this started either.

Basically, the expanders are thick, plastic, balloon-type devices. When I first saw the expanders I couldn’t believe that they would be inside my body.

There is a metal port in the “balloon” that enables the doctor to fill the expanders with silicone. After the mastectomy, you go in for fills every week or so until you have the size that you want. Then you leave the expanders in for a couple months in order to stretch and prepare the skin and muscle for implants.

They are pretty uncomfortable. It feels like I am wearing a heavy iron bra that I can’t take off. They feel very hard, like rocks.

The feeling of having tissue expanders in your body is just…really strange. It’s very hard to get comfortable while sleeping. Sleeping on your stomach is out of the question. Even sleeping on your side is a challenge. I try every night. When you move onto your side, the expanders pinch and seem to get heavier. Also at the end of the day, they feel very heavy. Gravity, I guess.

They do look pretty good, I will admit. Especially when I have clothes on, they look just like boobs.

In September, the tissue expanders will be removed and replaced with implants in a surgery called “The Exchange”. The surgeon exchanges the expanders for implants. I read on one blog that a woman called the exchange getting her oil changed. Funny. The surgeon brings different sizes of implants into the surgery to figure out which ones look best. They actually sit you up during the surgery (while you are under anesthesia) to see how the different sizes look. My girlfriends and I recently had a laugh over this..its pretty weird, right?

From what I have heard the surgery and recovery is much, much easier than the mastectomy. And the implants are supposed to be softer, more like breasts and much more comfortable.

I am excited and anxious to kiss these expanders goodbye. 4 more weeks!

 

What To Binge Watch After Surgery

My husband and I like to binge watch shows, and have watched most of the usual suspects. Some of my favorites are Friday Night Lights and Breaking Bad, and a few obscure ones like Younger and Catastrophe. I am so busy with work and my family that I feel like I never have time to watch TV anymore, but recovering from surgery was a great excuse to do some serious bingeing.

Between Netflix, Hulu, Amazon and cable there are so many great series out there now. I was determined to find some new shows to watch. Right after my double mastectomy, I started with the newest seasons of House of Cards and Bloodline. Both great.

Here is the list of what I binge watched after my surgery. I put them in order of preference, starting with my favorite one first.

Good Girls Revolt
This one was by far my favorite! It’s like Mad Men meets Newsroom (loved both of those shows). It is set in the offices of a weekly NYC magazine in the late 1960’s.The magazine does not allow female reporters…they are “researchers” who do all the work while the male reporters get credit. It is so good and I was bummed when it ended. Sadly, there is only one season. I can’t believe it didn’t get picked up for a second season.

Handmaid’s Tale
This was an amazing series…the only reason it wasn’t #1 is because I have read the book and saw the movie and felt that the series mostly stuck to those so it seemed a bit repetitive/familiar. There are some differences, and from what I have read Season 2 will be different from the book/movie. Looking forward to the next season.

The Keepers
This is a true crime documentary (similar to Making a Murderer, which is great) about a huge coverup of sexual abuse that went on at a catholic school and ended in the murder of a beloved teacher and nun. The crime was never solved. Its like a documentary version of the movie Spotlight. The thing I loved the most about the documentary is that two regular women set out on a mission to solve a crime. They were students of the nun and loved her and felt that justice as never served. So they started a Facebook group to try to get students of the school together to trade stories and information to solve the crime. Very interesting and well done.

Z: The Beginning of Everything
This is the story of Zelda Fitzgerald, wife of F. Scott Fitzgerald. It stars Christina Ricci, and I really loved her in the role. I have always found the story of their marriage interesting. I love how in this version of their story everything is from Zelda’s point of view. Can’t wait for season 2.

Gypsy
This is a new series on Netflix starring Naomi Watts. She plays a therapist who has some serious dysfunctional stuff of her own going on. She stalks the people that her patients talk about in their therapy sessions and tries to change the course of her patients lives. There is also some psychosexual stuff going on and some other interesting storylines. Parts of it are a little off and seem pretty unplausible…but Naomi Watts is a captivating actress and its worth watching.  {DISCLAIMER: I was on heavy pain meds when I watched most of this one..lots of people say its awful. I admit I thought it was bad..but in that “fun-bad” type of way.}

Hope this list gives you some unique ideas for shows to watch. Happy Bingeing!

 

 

A Quick Check-In

I’m baaack! Sorry for the long break and to those who had issues accessing the site. I don’t know how much more I am going to update this blog. In a way, it feels like this thing is almost behind me. I do have one and a half more surgeries to go, but I feel like the worst is over. Honestly, I am pretty anxious to put this behind me and move on with my life. But maybe this blog will help someone else going through this. I have not really decided how much I will update it, but I will probably keep it live for awhile.

For those catching up, the final pathology from my double mastectomy said that my cancer is Stage 1B. That means it was very small (under 1cm) with no lymph node involvement. While no cancer is a walk in the park, this is the type of pathology report you really want to get. The oncologist said that radiation and chemotherapy are not needed.

As a precaution for the cancer recurring, I will take a hormone blocker drug called Armidex for 5-10 years. Its actually considered an “oral chemo” but its nothing like the traditional chemotherapy we hear about. For most, the side effects are pretty mild. So far I have not really had any side effects. For a week I was having bad headaches, but they have subsided so I am hoping they are unrelated.

I still have the tissue expanders in until late September when they will be swapped out for implants. The expanders are definitely a bit uncomfortable, but I am getting used to them.

Most days feel pretty normal. Its a bummer that I have this second surgery ahead…another surgery to recover from. But, from what I have heard it will be nothing compared to the double mastectomy so I am hoping for the best.

It all kind of feels like a bad dream but its almost over!

Feeling Great

EICVLF4L2M.jpgI woke up today, dropped the kids at camp and suddenly realized that I feel amazing. Really good.

Best day so far!

I am feeling great, incredibly thankful and incredibly lucky.

I have to say it again….THANK YOU to all of my peeps. My friends and family are so incredible and I appreciate all of you.

I am so happy to have things pretty much back to normal.  Today is a good day.

 

Things Could Suck Worse

Things could definitely suck a lot worse.

I am trying to make this my mantra by repeating it to myself over and over. It is really true. But I need reminders sometimes!

Recovering from major surgery is hard.  Losing your breasts is hard.  Being away from your kids is hard. The idea that I have another surgery ahead in 2 months is hard.

All of these things suck. Even if you get the “caught early” cancer and don’t need chemo.

But I am hanging in there and giving myself gentle reminders during rough moments.

I am anxious to get things back to normal but am quickly finding that I can’t rush things. Very frustrating for me.

Example: Yesterday I was getting ready to pack my clothes to head home and my mom asked me if I wanted her to pack for me. I almost laughed…how silly!  Throw some clothes in a suitcase?

After about 7 minutes of attempting to pack I was completely and utterly exhausted. In fact, I promptly fell asleep and napped for about 2 hours.  Anyone who knows me knows I am not a napper. Unlike my husband, I have a really hard time taking a quick nap…have always been envious of people who could do that.

It freaked me out. I mean, if a little packing made me so tired, what will it be like when I get home to the kids? Who I am missing desperately. The past week has been the worst one for all of us. It’s time for me to be home.

Then, today at the airport, there was the whole wheelchair thing.

Wow. I was not expecting how it would feel to be pushed for what seemed like miles around the airport in a wheelchair. It was so odd. Just so uncomfortable for me. Way out of my comfort zone. I am a person who is always on the go and just letting someone take over was so strange.

I actually almost chickened out of the whole thing. When my mom and I saw the line of seniors waiting for their chairs (I was by far the youngest)…I said “Do we really need this?” She insisted, and thank goodness.  After getting out of my chair for just the security bag check, and dealing with the bags (I told the attendant to take my laptop out of my bag but she didn’t, etc. etc.), I was again exhausted and anxious to sit back in the chair.

I realized that I really do take the little things for granted. Being in the wheelchair gave me a glimpse into what it must feel like to be a disabled person and just how challenging that would be. I think from now on I will never complain about long lines and airport stress. I will just be thankful to be able to walk to the gate.

Now starts the back at home phase. I am so happy to be going home!

Things could suck a lot worse.

Healing + Happy

a13It’s been a really positive couple of days. Today I am feeling pretty great, actually.

All four of my drains have been removed. Woohoo! So happy to have those little guys gone. Living with appendages is so, so strange. The removal did not hurt a bit and having them gone has really decreased my pain level.

As part of my breast reconstruction, I also got my first fill of saline into the tissue expanders that were placed during my mastectomy. I have to say, the process is pretty amazing.  My “foobs” are looking pretty good…with clothes on they look completely normal and I don’t think anyone would have any idea that I had a double mastectomy less than two weeks ago. Even without clothes, they don’t look too bad. 🙂 I know that part will get better as they heal.

The expanders are a bit uncomfortable, but really not as bad as I expected. They will be swapped out with implants in a couple of months with a minor, outpatient surgery.

MOST importantly, the final pathology report had no surprises and no lymph node involvement! So…the plan from the oncologist is for me to take some medication for five years to prevent recurrence. I am very lucky to be avoiding traditional chemo and radiation.

The visit with the kids was awesome. Hardest part was having to say goodbye again, but I can’t wait to see them next week when I will be HOME for good! Being away has been one of the hardest parts of this whole thing, but I am so thankful for the quiet time to recover and the amazing doctors who have been caring for me. My parents and sisters have also been incredible and I am so appreciative of everything they have done to help me through this.

Big kudos as well to my husband, mother-in-law and all of our friends for holding down the fort at home. I know it has not been easy. Especially with all of the little fun extras life throws you (a case of head lice, broken A/C, the list goes on…). I feel so grateful for all of the help from our friends and neighbors, I just can’t say it enough. It does take a village and I am so lucky to have a great one.

Feeling very positive and looking forward to the next chapter.

Drain, Drain Go Away

cora-ortiz-250499.jpg

So happy that the surgery is over!  Very relieved to be done with it.

Now I  am in drainland..totally not fun. I won’t go into too much detail here, because they are pretty gross. Lets just say that I will be happy when they can be taken out! First drain appointment on Monday, so fingers crossed..even if 1 or 2 were taken out, that would make me happy. I have 4 total.

I have been on a pretty steady schedule of pain meds, so lots of napping. Trying to find the balance between getting a bit of exercise as well, since everyone says walking is important. Its hard because the pain meds do help but they make me soo drowsy.

And then, the worst part is this darn nerve pain. I guess nerve pain is not able to be controlled with the standard pain meds.  Hopefully on Monday they will give me something else for that very nervy nerve pain!

As far as the cancer goes..surgeons were optimistic as they did not see anything surprising during the operation.  The final pathology will be ready in 7-10 days. More waiting! Fingers and toes crossed.

Thanks so much for all the texts, emails, cards, gifts, etc…and for arranging playdates with my kids and meals back at home. So thankful for my awesome circle of peeps.

XOXO