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I am half way through.

Okay, okay… I never even updated about the when and what and where of surgery on here…. I was too nervous.

Let me tell you guys about that, now that it’s over.

I was terrified and I have no idea why. It was my 13th surgery.  I had been put to sleep and had insane things done to me 12 times and for some reason, I was having horrible, GRAPHIC, TERRIFYING thoughts and images go through my head any time I really sat down let my thoughts roam free. I am not kidding when I say that I thought I was going to die. It was a gut feeling and I hated it.

Then the day came and I was so at peace and ready for whatever was going to happen and no longer thought I would die, because the gut feeling was gone.

Being ready for anything came in handy, because right before I was wheeled into the operating room, a change was made. But let me start from the beginning.

I had planned (along with my surgeons) to have a prophylactic mastectomy on the right side, because of the scary large fibroid adenomas and the amount of grief that was sure to cause every time I had a mammogram. We would go in and move my lattisimus dorsi muscles on BOTH sides in order to reconstruct. Even on the prophylactic side, despite it being skin sparing, so that both sides would match. Implants would go in under the muscles. Skin would be moved from my back as well. Most of you know all those other ‘minor’ things that also happen during this whole process. They aren’t so minor when you realize what is actually being done to your body, but they are surgically.

The morning of surgery, my surgeon came in and told me that Dr Long (Plastic Surgeon) would start. He would start with the muscles. I’ll explain how that works:  he would detach the back muscles and possibly the skin needed. He would not be finished, at all, at that point. Then Dr Bland (Surgeon) would perform his part- the prophylactic mastectomy. Next, Dr Long would come back in and tunnel those muscles and any skin he left attached to them under a small tendon and the skin on my side. At this point, my back would be closed back up and Dr Long would reconstruct.

Dr Long came in after Dr Bland… a little late, to Blands dismay. He drew allllll over me and assured me that my tattoos would not be touched (HOORAY!!!), and asked if he could use an expander on my left side so that I would end up with breasts the same size I started with- I am too small for much actual tissue to be moved- as it would be easier to do with an expander and then an implant. I was so calm that I just told him to do whatever he needed to do to get the results he wanted.

He loved that answer.

……Surgeons. Those egos are so big.

So, I was only in the hospital for 3 days following surgery and I left with all six drains and some necrosis on the left side (the side with the expander), though I had expected it on the small circle of skin moved to the prophylactic side, because I have read that it’s common there. In the hospital nearly half of the tissue that was moved was dusky. Within a week only a quarter was and just a few days later that duskiness became hard, which is good.  I had four drains out after 2 weeks. The last 2 came out this past Monday, 2 days before the 3 week mark. He said my necrosis is healing way faster than he is accustomed to and I begin filling my expander on the 31st, because we could safely guess that the necrosis would be healed by then. I think it will be completely healed by the 4 week mark, which is next Wednesday.

The very next day- April 1st, I will have a mammogram. Can I tell you how scared I am? Not that there will be any abnormalities, but that it is really going to hurt to put a recently filled expander into a mammogram thingy. Is this a cruel joke?!

Pathology has come back on the mastectomy that was performed and all was clear. Three nodes came out and the fibroids were so large that they went on and on about it on the phone with me for quite some time. I just laughed and said I knew- I mean, they had been in my tata since I was about 16 and one of them really was huge. I mean… HUGE.  More than 6cm in diameter and so rubbery that when the biopsy was performed last year, the marker wouldn’t stay in it. Not to mention how hard it was for them to biopsy the thing. Manually.

So glad that’s over!

Anyway, I cannot use my crutches or my arms (nothing that requires weight on them) for about 2.5 more weeks. I have gotten really good at putting on shirts and moving around without using my shoulders at all. Haha! I’ve also learned how to target specific muscles when I move (sitting up was the first thing I had to do, so my abs do most of the work, but eventually turning my torso became necessary and I had to learn to NOT use my lats. Now, I can turn and my boob wont flex. Hooray! Haha)

Anyway. I am relieved. But of course, there is at least one more surgery once the expander is full. Number 14 will be an easy outpatient surgery but, of course, it will signal relief once it is complete, now matter how fast and easy.

Here are some links about what I had done- essentially 3 different surgeries took place, but I wanted to share some lat flap info if anyone needed it.

A video, if you can handle watching a surgery: https://www.youtube.com/watch?v=ALIrQGX03dE

http://www.mdanderson.org/patient-and-cancer-information/cancer-information/cancer-topics/cancer-treatment/surgery/breast-reconstruction/ld-flap.html

http://breastcancer.about.com/od/reconstructivesurgery/tp/latissimus_dorsi.htm

That should cover it!

Breaking up with Tamoxifen

(Two in one day.. I know; I’m sorry! But PLEASE read this one 🙂 )

 

I am very seriously considering no longer taking Tamoxifen.

I never thought I would say that.

I never thought I would say that because I do whatever my oncologists tell me to do. And I honestly think that if Dr. Howard (my Childhood oncologist) told me to take it, I would NEVER consider dropping it.

Let’s be honest, he is a better doctor than my current oncologist.  (No worries, she doesn’t read my blog. Not even sure she would recognize me on the street or remember that I was about to get married the last time I saw her.)

I am kind of shocked at myself for even considering dropping the drug. I love modern medicine. Really.

When people insult chemotherapy I take that personally because I went through it in all of my glory and it was WORTH IT. I won’t let anyone tell me it was not worth it and green tea would have done the job much easier.

And well, I knew all the statistics when I started taking Tamoxifen and I kind of knew what to expect and I knew it wouldn’t be pretty. I told myself ‘it ain’t chemo’ and got on with it.

So, in a week I set the date for my second mastectomy. The stats are still the same this month as they were before. After my second mastectomy, chances of reoccurrence are 1%, with or without the Tamoxifen.

I’m not really feeling listing why I want to drop it from my regimen after surgery, but I do want to know how you all feel about this. If you have not taken the drug, the side effects are insane. Feel free to do some research, because it’s not just hot flashes and butt expansion. The unlisted ones are also insane (for example, lightening fast stabbing headaches up to 40 times an hour. I counted this morning. I know it is PROBABLY the Tamoxifen because of previous conversations with my medical team and because I left my meds at home when I went to the beach with Camp… and they stopped. They came back about 2 weeks after I came home and resumed meds.).

 

So, tell me ‘bout it. Pros and cons from your vantage point? Any experience??

(yes, I know I need to talk to my medical team about it. I will. But I’m talking to you first!)

July

July is a special month for me every year, especially this year.

This year Ill  turn 28 and celebrate ten years since my amputation.  I know that sounds weird, but it is kind of a day to celebrate.

July 24th of 2003 is a day to celebrate the anniversary of because it marked the day that ended a two year struggle. In two years I had about 6 surgeries/procedures (some I traveled for) because of all of the issues with my knee replacement, I was constantly in pain and, at one point, it was best for me to use a wheelchair while I was in high school. (I actually stopped using it my senior year, against my mothers wishes…so maybe it was best for me the entire time.)

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Other things Ill do this month?

Wait on a doctors appointment my Oncologist is setting up (more on that when I know more. keep your fingers crossed for good results!)

Speaking of Dr N., I saw her Friday! I had fewer tests than I would have liked to have… (strange idea, for most) but what I did have done showed positive results. Ill see her again in December, but I am to call her if I have any painful side effects from the meds. Let’s hope that doesn’t happen!

Here are a few photos from my visit!

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makin this gown look good!

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Cancer number 1 and all of those surgeries didn’t leave many working veins for these guys.. and my left arm is out of commission!

Im sorry Ive been over loading you guys with photos! I just can’t help myself 🙂

Grace and Peace

The past 48 hours have been full of little miracles and gifts! If you are reading this and had a part in any of these little miracles or gifts, know that I (WE) feel so blessed and so thankful and so amazed.

Seriously.

I won’t go into detail about some of these little graces but here is a photo of a wonderful gift that was made for me!

runtothebear(ignore how silly I look, please.)

We are hanging it above the mantle. It’s a perfect reminder to us that we need to run towards this with every ounce of fight that we have!

As for an update, very little has happened.

Health wise: Had to run to the doctor’s office for quick look at this weird squishy [read: cancer is NOT squishy] lump on my ribcage, under my arm about 3-4 inches. We thought it was a fluid buildup from removing my drain a bit early (because we thought it wouldn’t be a big deal with me having surgery again…). However, it is not a fluid buildup.  It is MOST LIKELY a swollen lymph node but it may also be a fatty tumor or something equally random and weird. It is definitely nothing to worry about.

Also, I got the go ahead to use my crutches last night. It is REALLY hard to do when your arm and side are so numb, but I’m figuring it out. It also really wears me out.

The only things that keep me in a battle with progress are a) getting dressed and b) sleeping.

Getting dressed is an obvious one. Even if I am allowed to move, I just CAN’T. My range of motion is janky and sometimes it just really freakin’ hurts. Sometimes I can put clothes on; I just can’t get them off!

Sleeping is less obvious. Before surgery and since I was 15 and my knee replacement broke (which led to the amputation), I slept on my left side. I did that because well, a broken knee replacement and constantly operated on leg are just not easy to sleep on. Post amputation, it remains difficult because I have a hip stabilizer. Now that I’ve had a mastectomy and lymph biopsy on my left side, I can certainly NOT lay on it. Laying on it could cause lymphedema, so I suppose it’s a good thing that it hurts. I wake myself up trying to roll over just the slightest bit, and it is instinct to roll to that side after so many years.

And last, but not least (and also not new, I just couldn’t figure out how to put this in the previous post), Albus is home! He has learned that if he lies on my left arm I can’t lift him to make him move. He really likes that.

Here are some photos of my sweet boy:

Newest to oldest (the first two are after his return!)

albus is home

His tongue always sticks out like that…

albus selfie

I had my camera up on my phone and he bumped me, essentially taking his own photo

muddy al

He had a bath the night before..

christmas albus

Xmas Albus

photo(5)

My all time favorite photo of this guy.

Lions and Tigers and Bears

You guys… YOU WILL NEVER GUESS WHAT HAPPENED.

Never.

It’s okay, though, because I’m going to tell you!

I am NOT having another surgery! Yay! Hooray! Do the Harlem Shake! Woo!

During my previous surgery, they removed what would ‘normally’ be removed in a mastectomy and the surgeon and pathologist knew by looking at it that the margins wouldn’t be clear, so they removed ANOTHER bit.

The pathology report is correct in saying that margins aren’t clear. However, it is also correct in saying that they ARE clear. You see, it is written out of order. It lists the second section that was removed first. It says those margins are clear. Below that, at the end of the report, it lists the first sections margins and that they are not clear.

That may not make any sense. If not, what it means is that someone didn’t read the report thoroughly and notice that it was written out of order. IT MEANS THAT MY MARGINS ARE CLEAR! Yay! Clear Margins! It means that I don’t have to have surgery! Yay! I can keep recovering without starting over!

More good news? I got rid of my drain today! I am no longer carrying around a bulb of blood and other fluids. I don’t have to find a place to shove a blood bulb when I get dressed! (You’d think it would make sense to just shove it where the boob used to be, and I have, but eventually, you gotta move it… it starts to get a littttle uncomfortable. And I realized someone might see it and think I had funky cleavage.)

Now that I can’t shove the blood bulb into the empty place on my chest for a faux boob, I guess I can start wearing my fake boob!

Actually, I did that today.

I tried a few days ago and just couldn’t figure the thing out.

I had it all wrong! No idea what I was doing.

Then Whitney, my sister, comes in this morning and holds it up to her boob like she just KNOWS how to wear it. I’m glad someone understands it or I’d just shove some socks in a bra (when I can wear one, again) and call it done!

Now that surgery is out of the way, on to radiation! I’ll start in a few (4ish) weeks! (No details, yet. Must see my radiologist and oncologist before I can tell you those.)

Little Accomplishments

98(This photo is of me in June of 1998, about 9 months into treatment for Osteogenic Sarcoma. I was about a month shy of 13 when it was taken)

I just realized that seven days ago I was getting everything ready for the big day! It feels like just yesterday!

I mean, have I REALLY been sitting around the house with one boob for a week?! All of Blake’s time off is over?! You have got to be kidding me.

It might be easier to imagine had I been able to accomplish more in my recovery, but not being able to walk around definitely makes it feel like I’ve accomplished even less.

Wednesday was the last time I threw up from the anesthesia. (It has always made me throw up for a few days post op)

Friday was the first day I didn’t have that post surgery hangover feeling, and I started to really get an appetite. To celebrate, I we got my hair washed and my bangs trimmed! It was the best day!

Yesterday I started defying my caretaker (I like to call him that, I don’t know why. It’s just hilarious to me) and hopped myself to wherever I wanted to go a few times. That was an accomplishment to me, but he sure did fuss. We also brought my mom some food for my sweet Albus and I got to see him. I have missed him so… I wish I could walk just so that I could have him back and be able to take care of him. Screw everything else I could do… I just want to walk my dog!

I hopped today, too (In my defense, things needed to be done and I wanted to do them). I also figured out how to put my hair in some sort of pony-tail. I can lift and hold my arm just high enough to also tilt my head down and put my hair in a normal pony-tail.  I even went so far as to announce, “I did it!” I can also almost pull up my skinny jeans all by myself. I can pull up the loose ones all by myself if I hook my little Huge JP drain to whatever button up I’m wearing. AND I can KIND OF do my own makeup. It’s not as fancy as it was a week ago, but I’ve certainly made progress, considering I’m wearing it at all right now.

Tomorrow I’m sure I’ll make more silly little progressions, and the next day, too. The only problem here is that it is all going to go to hell when I have surgery again this week.

Tomorrow my sister is bringing me to meet with the plastic surgeon in the morning and is will look over everything and get a plan for moving tissue, if needed. Then I will run downstairs to my surgeon’s office and tell him or his nurse that I’m done. Then a date will be set for the next surgery and I’ll start all over.

I am REALLY hoping they take out this drain tomorrow, even though I’m having surgery again this week. I mean, REALLY hoping. The tube has moved a little and seems to be directly in the hollow of my armpit. Right around my sweat glands…

Sorry if that grossed anyone out. But it’s life. It’s cancer…  and it’s not all pink ribbons (or gold ones) all the time. It is, more often than not, time off work for caregivers and patients, puke buckets, beeping pumps and an inability to bathe yourself. It is celebrating when you can lift your arm (or put weight on your leg), when you don’t get blood or puke on your favorite jeans (that you are wearing because they make you feel pretty, even if they aren’t convenient, darnit!) and when you finally know your protocol (maybe that’s just me. I might throw a party when I learn it).

Cancer is some weird shit, guys.

At least I’m prepared. And I won’t be bald this time (not that I would mind).

The Cancer will come out Tomorrow,

Tomorrow!

Ok that was corny.

Tomorrow is my mastectomy!

Yesterday I had all of these thoughts about it and I told myself I’d write today. I can’t even get back to that place in my head today, though. I’m just in this state of mind that is similar wanting to finish a painting, or the last seconds before you begin a very important test, or right before you open that letter from your college of choice to find out if you are accepted. All of these things are also directly comparable to how I felt as a kid, when I was very, very hungry and the adults took too long to pray before Thanksgiving dinner. I could think of things like this all day if I thought someone wanted to read it, because I’m crazy wordy. But I was going somewhere with all of this…

I am READY to Run to the Bear.

Tomorrow marks the day that my treatment STARTS. The day that we begin to learn about the cancer, its personality, how it has affected my body and how it can continue to do so once it is removed.

But what are they physically doing, you may wonder? All they are doing is removing it. They are going in and removing my entire left breast, including the skin. This is called a Total Mastectomy. They are biopsying my axillary lymph nodes and if those come back compromised, they will biopsy all of them.

I will only be in the hospital overnight; however, since I am an amputee that chooses crutches over a prosthetic, I will be very immobile once I get home. I’m kind of sad about that. I am not a good recluse unless I’m already depressed… you guys may hear from me a lot during my recovery.

Post surgery, aside from being immobile, I’ll know what will happen to me as far as treatment goes. I wish I could say I will know when I leave the hospital, but I won’t. I can say that I will know by the end of the week, though. I cannot wait.

But tonight?! Tonight we feast! I am going by the hospital so I can get a shot at 4PM, then  meeting up with family so I can chow down pre-surgery!

Lady Tragedy

Surgery date set? You bet your sweet ass it is. Do I know the details? Nope. Just that it is February 18th. Will I know the details soon? In the words of everyone’s favorite Alaskan politician… you betcha! I meet to plan the surgery the 4th. That’s a little under a week away. I cannot wait.. but I have a lot to plan. I’ll be off my crutches for some time… and that means more to plan than the average mastectomy patient.

I’m really worried about money during the time I’m recovering and the time after. I won’t be working. I don’t think my boss realizes how much I won’t be working. I feel guilty about work. I got the job and just a few short weeks later? Oh, hey there breast cancer!

Honestly, I feel guilty about a lot of things when it comes to having cancer, again. I feel guilty in pretty much every aspect of my life where it is concerned. This is not like the survivors guilt so many of my peers experience at camp. Nope. Can’t explain what kind of guilt it is like, but imagine bringing people into a life of cancer. Imagine doing it to family AGAIN, and to friends for the first time. Imagine MAKING friends while you have cancer. Adult friends. With a life and a family. Imagine people you barely know helping you. People are emotionally invested in me and they did not ask to be emotionally invested in me WITH cancer. But you know, they are. My bad.

In the complete opposite realm of friendship… jeeeeezus at all the people coming out of the woodwork. I mean… wow. I have about 20 pending friend requests on facebook from people I haven’t talked to in years; people I’ve barely spoken to EVER; people that I know do not like me AT ALL; etc. People are attracted to this, I’ve always known that. People are curious. Tragedy made a lot of people famous in the theater world, didn’t it? It’s really no surprise, is it? Or well, it shouldn’t be.