Wednesday, June 30, 2010
The final pathology report shows that both sentinel lymph nodes were in fact, negative. The cancerous cells did not spread into my lymphatic system which means they do not need to go back in and surgically remove any additional nodes and I do not need radiation therapy. This is all really, really good news. Secondly, the margins they took around the tumor were excellent -- meaning they don't need to go in and take additional tissue either.
Third, they removed one of the two drains, changed out all of the steri-strips and removed the stitch they placed to mark where the tumor had been. Let's go back to the removal of the drain ... we thought pulling out the pain buster was icky ... that was NOTHING compared to the pulling -- and I mean PULLING out of the drain! The surgeon's PA told me to take a deep breath and on the exhale, she pulled and kept pulling and out came a foot of drainage tube -- I didn't feel pain exactly, but I did feel a lot of pressure -- and even though I didn't feel the pain in the traditional sense, my body knew it hurt. I shook, and my chest felt aches like it was bruised, and when we got home, I was wiped out. And that was just the left drain. The right one still has to come out. We're hoping it comes out on Friday, before the long holiday weekend.
I thought I would put up a few pictures of what things kind of look like at the moment.
Here is what things look like right now. What you see on my right side, that tube that's running under my skin -- that is the drainage tube. It runs from the top, down and around and out the side of me. The bulb at the end of the tube that we have to drain 3 times a day, is pinned to whatever I'm wearing. Needless to say, having one left is much easier than two. The left drain looked the same, under the skin and ran under the chemo port. The chemo port is what you see on my left side -- that quarter sized circle under my skin. If you run your finger over the top of it, you can feel a tiny top to it where the IV will go in. There really isn't any pain from the port -- just when it's touched it feels weird. There really isn't a better word than weird for how it feels. It has a catheter that runs from the port somewhere down into my artery. Directly above the port -- you can see a small incision -- or a small scab now where the incision used to be -- the stitches have dissolved already -- I believe this was used to guide the catheter from the port.
Here's a picture of the bulb that is attached to the end of the drain. It's a pain having to be mindful of it all the time. But I am not as scared as I was before yesterday about accidentally pulling it out, that's for sure! Knowing that there's about a foot of it inside sure makes me feel better that I can't accidentally yank it out.
The other stitches around my incisions have dissolved as well. There's some really dark, scabbing going on and some blistering of skin that "died" and is coming back. They gave me a prescription for cream that is like cake frosting -- it's suppose to help with the scabbing parts, so hopefully they'll heal up and come back, instead of needing to be reconstructed.
Yesterday was the first time I saw the actual cuts. Honestly, it's not as bad as I thought it would be. They aren't healed yet, so the scarring could be much different, but as for the actual cuts -- they're not so bad. They're not as big and long as I thought they would be, but again -- the scars could end up differently.
Everything is numb except for right down my sternum. That's the only place I have sensation at the moment -- thankfully ... since I'm sure the incisions are sore and the blistering probably hurts. The only continued pain I have right now is from the remaining drain. I continue to get sharp pains from where it's stretched out my skin. I do have some cramping of my chest muscles every now and then too. My range of motion for my arms is getting better and I'm starting to put some weight on them -- like lifting myself up, helping to scoot backward or forward on the couch or bed. I played a little fetch with Tomo too -- gently tossing the toys underhand. He loves to play tug, but I'm not ready for that. Luckily he drops the toy after a minute or two so I can throw it again.
We slept in our bed last night, for the first time in a week. Since we've been home, we've been sleeping in Mike's game room, on his couch -- as you can see from this picture my mom took of us. Mike is just too tall to sleep all curled up like that. With the removal of the left drain, it made it easier to sleep in our bed. Mike didn't want to leave me sleeping in the game room on my own. Even though I told him it was OK and that I would be fine, he still slept on the game couch, every night.
Sunday, June 27, 2010
They're heading out in a few days to make their way to Nebraska to see my brother-in-law's family. We're on the way out there -- and on the way back, so they'll stop again after the 4th of July. By then, I should have the drains taken out and be more mobile. I'm really excited they're here.
My pain buster - it is (was) this bulb container that had numbing medicine in it. It had two micro tubes that ran from the bulb just under the skin on my chest, numbing each side of the surgical sites. They said that it would run out on its own, and when it did - we can either pull it out on our own, or just let them pull it out on Tuesday at the post-op appointment. Since it was empty, we decided to pull it out -- one less thing for me to carry around (or forget to carry around -- which happened a few times and caused a bit of panic because I thought I was going to pull them out completely). So, after I got up, Mike helped me get cleaned up and changed out of the compression vest. Then he started pulling the tape on the right side.
After he got the tape off, he started pulling at the pain buster catheter. They were micro tubes, really, really small. When the nurse told us that we could pull them out - we assumed that we were only pulling out an inch or so of tubing. Not the case. Mike kept pulling ... and pulling ... and pulling. After about a foot of micro tubing, we finally reached the end. Holy cow. We could see the tube snake its way backward out of my chest. The nurse could have warned us that we'd be pulling out a foot of tubing -- and that we could see it! Ugh .... we both needed a minute, because there was still the other side to do. So after gathering ourselves ... we tried the other side. This side I could feel come out. There wasn't any pain, just a pressure change, thank goodness. But we finally finished, wrapped me up and we both kind of shuddered and needed to take a minute away from this early morning dose of reality.
I'm glad we pulled it out however, for multiple reasons. For one, my body must know its out because I feel ten times better. One less thing hanging out of me, and I can feel it. Two, I'm glad we pulled it out while my chest was still numb. If we waited until Tuesday, that's two days without the numbing and I most likely would have felt it more - so I'm glad for that. Three - it's another step forward. A step closer to finishing -- being better -- being done.
The numbing medicine is wearing off now, I can feel little sensations -- like a sleeping limb waking up -- the little pricklys. I'm hoping that when it is fully worn off, it won't be too painful, that the pain is controllable with just the vicodin, and then with just Advil or something not prescription. We'll see how things go -- post op is Tuesday.
Saturday, June 26, 2010
Anyhow - things are OK right now. Last night was the longest night I've gone without the pain meds, 10 pm until we woke up this morning at about 8 am ... 10 hours. We've been trying to take them every 5 to 6 hours, so 10 is a lot. Getting down the stairs this morning not on the pain meds was pretty painful. I tried not to cry but I couldn't help it. I know that all this is pretty tough on Mike and the more I cry - I know the more it hurts him too. He's been amazing taking care of my drains and making sure I'm eating before I take meds - helping me change.
I pulled everything off yesterday to change - it looks pretty scary -- like squished water balloons. I have a few catheters running through my chest as well, more scary. And then the chemo port -- not only does that look scary, I think I can feel it in my artery - anytime I get to moving around and my heart starts beating faster than normal, things feel tight and I feel like there's a gagging sensation - it makes me think that's the catheter to the port. I know it's going to be scary the first time it gets used as well.
I knew this was going to be a long road ahead, but it didn't really set in until I saw myself for the first time. I'm scared to start the expansion - more pain. All and all - I'm scared at how much all of this is going to hurt. I fully understand now why some women don't go back for reconstruction. Just recovering from deconstruction is tough enough.
So the lymphscintigraphy - I walked in expecting a normal exam room and instead walked into an exam room that was 5 times the size of a regular one with a huge maching inside that looked like the MRI machines. Luckily I didn't get the needle through the nipple and instead, they injected very close to the tumor itself. It hurt, but not too bad. After injection, they sent me into the scanner to take pictures of the tracer in the injected site. They slid me out of the machine and we waited 15 minutes to take another image. It went on like that for about an hour, until they had all the pictures they needed to ensure that they knew which node was the sentinel.
The last thing I remember from surgery is being in pre-op. I was kissing Mike goodbye and then the nurse walked over, seeing my anxiety, and said "Here, I have something that will help you" and she injected something into the IV and that's the last image I have -- the last memory until waking up post-op. Since then - it was the hospital bed, peeing neon blue and green (from the radioactive tracer), nausea, emptying drains, trying not to forget to pick up my painbuster where ever I go, eating before meds, peeling of adhesive from all of the tape and EKG lines that were left on after surgery ... recovery, recovery, recovery.
My sister's clan arrives tomorrow afternoon. I'm excited to see them, but sad I can't pick up any of the kids. Tuesday we go for our post op appts. Hopefully the drains will be done by then, and I can get rid of all these tubes.
For now, my mom's going to try to wash my hair for the first time since Wednesday morning. I need it.
Friday, June 25, 2010
around 6 pm.
I'm doing OK. It certainly is pretty painful and these drains are a
pain in themselves. One on each side and then a bag that I have to
carry around that is my pain buster - its a line to each side and it
delivers numbing medicine on it's own.
I slept the longest last night - about 10 hours. Mike gave me my first
sponge bath this morning. We had a nausea spell yesterday too - that
didn't feel good. But we think I didn't have enough in my stomach to
handle the vicodin.
That's all I have for now. I will try to write more later.
(Sent from my iPhone)
Tuesday, June 22, 2010
I have my lymphoscintigraphy appointment today at 3 pm. They need to inject a radioactive tracer now, so tomorrow morning they can find what lymph node the tumor drains into. If the cancerous cells have spread to my lymph nodes, the first lymph node it will be in, is the one it drains into. They will remove that one and send it to pathology while I'm still in surgery. Depending on results, I will either have more lymph nodes removed at that time (and require radiation therapy) or -- if nothing is found in that "sentinel node" -- they move on.
Having lymph nodes removed increases my risk of lymphedema - a build up of fluid in your arm (in my case it would be my arm since that's where the nodes would have been removed). Any bruising or minimal type trauma to my arm could cause additional fluid to flow to the area, and because the nodes that would have been responsible for draining that fluid, and are now not there anymore, my arm could swell up and it could be an ugly thing.
And for me -trying to not run into things -- will only make me run into them more. I have enough trouble as it is crashing into stuff when I walk. So having to be extra careful just spells disaster for me. I think I'm going to have to install bumpers around my desk ... and maybe around the whole office if they'll let me.
At least once it's over - Mike and I get to head out to the Red Sox game. Hopefully there won't be too many tears during the appointment. It was described to me as a "bee sting" ... and well -- those hurt -- so I'm expecting the worse. But -- if it doesn't show up in my lymph nodes -- which is what I HOPE is the case -- then a little bee sting is totally worth it. And ... if it is in my nodes then ... heck ... a bee sting isn't the worst of it - so, I guess it's ok either way you look at it.
(From the drive up)
The weather was perfect - sunny and 70's the entire time. I only got a few shots with my phone on the drive up (Mike got more with his, those are below), the rest are on my camera. It was truly breathtaking. It was very relaxing. We took the shuttle into town Friday night for dinner, ate at a bar called the Tap Room. Saturday we got up early (credit to Tomo for the 7:00 am wake up call) and tried our hand at racquetball, which is my new favorite sport now and I'm going to try to pick it up after I heal. After that we played around on the basketball courts -- Mike taught me how to shoot properly as well as how to do a layup. I was better at the free throws than I was the layup -- getting the hand-foot coordination down is tricky the first few times. We had breakfast in the cafe and finished our coffee down by the river, sitting on the rocks. Afterward, we cleaned up, grabbed Tomo and took to the trails into the villages, Lionshead and Vail Village. We must have put in 6 or 7 miles walking around - and Mike did it all in flip flops! We improvised where the trails were closed -- going around the "Trail Closed" signs to stay as close to the river as possible and not on the main road. We see cars everyday. We weren't interested in walking next to them. At one point we had to cross over and follow the main road - but we quickly made our way back to the river. It was gorgeous. Mike was a sport -- I'm willing to take the trail as far as possible and improvise when I need to find a different path. Mike, being the more rational one who usually obeys "Closed" signs, indulged me and let me lead -- which meant climbing walls (passing Tomo up to me on top of said wall) and going through fences and squeezing in between gates in order to get where we needed to be. He had fun though, and even though he doesn't like the word "adventure" (because it usually means someone is lost) -- I think he liked this adventure.
(The roaring river)
Once we made our way into the villages, we ate and had a few beers. Tomo slept in my lap -- thoroughly exhausted from the walk. He NEVER sleeps in my lap, so I really took advantage of how tired he was. We made our way back to the resort, I napped and then we went to dinner (via shuttle) in Lionshead at a restaurant called Montauk. Mike indulged me again and we ordered a dozen oysters to start dinner off. Sunday we had breakfast at the resort, a lovely buffet, and took Tomo for another walk on the trail. We let him play in the river, which really surprised us both because he's such a priss sometimes that we never thought he'd get wet voluntarily! He really liked biting at the small waves and chasing down anything that was floating by.
When we got home, it suddenly dawned on me that this is the week everything happens. It snuck up on me. But like Beth said - that means the weekend worked.
(Summer Ski Lift)
Friday, June 18, 2010
A weekend away with our little family I think will be nice, considering the up hill journey in front of us. It's the last weekend we have before surgery and recovery ... which will most likely roll into chemo. By time chemo is finished, and before my hair is most likely on its way back - most of the year will have passed and we'll be into the holidays. Jessie (not on Halloween) and Erin will have had their babies, Mitchell will be around the corner to 2 years old, Rhonde will turn 5, Ella will be a few months away from turning 1 - Kim and Mike's nephew will share their birthdays, My sister and mom will have their birthdays, as will the Baileys (just before the baby comes) ... somewhere in there I will (hopefully) have had my final surgery to swap out the expanders for the permanent implants ... summer will have passed, and most of the trees will have likely dropped their leaves. The first snow will most likely fall on Halloween and then not again for a few weeks. Tomo will turn 4 and time will just keep ticking away.
Things, people's lives - all will continue moving forward, and it feels like I will be stuck - stationary - still in the "treatment and recovery process" ... for a year, at the least. Yes, I'll be moving forward in my process, but I will still be in the process. On my way, but not there yet. Not turning a corner or entering a new experience - I will be in the same experience. So there's a pause button, but not a fast forward button, on life. Inconvenient.
But what's a year or two in my life on pause? That's shorter than the lease on my car. It's a blink of life's eye.
Being that it is the last weekend we have before surgery - that means it's the last weekend we have with my "girls." I told Mike we're bringing the camera.
I have never in my life been "put under." I mean, if you count the time I had my wisdom teeth pulled out, okay -- then once. But I'm not sure that totally counts. It was IV sedation -- so okay, I've only been "put under" once in my life.
On my way home from work I wasn't thinking about the surgery or the upcoming tests or anything like that. I was just driving. Out of nowhere, the image of me laying on the operating table pops into my head. I'm draped in blue surgical cloths and there are nurses standing by my head and then they put that clear, anesthetic mask over my face. Ugh - I was gripped with fear.
Somehow I forgot that they had to put me under in order to do surgery. I mean, I guess I didn't really forget - or fail to connect the dots, but that one little detail - the actual method of putting me under - I seemed to have not put any thought into. How could I forget that detail? It keeps replaying in my mind.
That - and the image of me leaving Mike in the pre-op waiting room and walking into the surgical area. I have to leave everything with him. My ID, my glasses ... my wedding ring.
The nurse from the breast center pre-op office called me today to give me the run down on the do's and don't's. After she was finished - and after I caught up with my notes on what she was saying - I asked her to go over what they had me down for. She says, "bilateral nipple sparing mastectomies, sentinel node biopsy of the right breast, right axillary dissection , port placement, and bilateral reconstruction with tissue expanders." (Oh - is that all?!) And how long is all this anticipated to take? About 7.5 hours, she says.
All in a day's work, right?
Wednesday, June 16, 2010
So, one week from now I'm going to be on the table and under the knife -- for the first time in my life. I hope the second time it's because I need a C-section.
(Here's something I was playing with)
Tuesday, June 15, 2010
We were concerned that with me out on medical leave - finances would be tight. We would scrape by to cover it, and we'd be tight, but ideally -- the major things would be covered. And with short term disability ... well that doesn't pay until day 31. Days 1 - 30 do not pay, and rely on the employee to use their own paid time off to cover the gap. That wouldn't have been much of an issue except that I used all but 3 days of my PTO for the wedding and the honeymoon -- and more recently -- dealing with the initial breast cancer diagnosis.
I met with HR today because I was initially told that "someone" had asked if they could donate some of their own paid time off to help "shore up my bank." Not having a formal policy in place to accommodate such a request, my good work - did it anyway. In fact, so much paid time off was donated by the good people at my good work, that I am now not only covered for the entire 4 weeks that I will be away from work, but I will also be covered as I go through chemo.
How do you say thank you, when words aren't nearly enough? How do you give thanks when people come together and the out pour of their support is so great, that it brings you to your knees? I wish I had the words to give enough thanks, because saying "thank you" just isn't near enough. I am so humbled by the amazing support that I've received -- I don't feel like I deserve any of it. It's all so much - so much more than me, and I am just me ...
The significance of this package is not that it was a book and a cute pajama set sent from an old friend. It is what this small little package is offering. Support, from a distance ... from a friend. Support from someone who knew me when I was just a kid. Support that says - "you're going to be spending a long time recovering and I thought you might like something comfy (and cute) to do it in. Something that I picked out especially for you, specifically for this journey in your life. Know that when you wear it, you're not alone. And, oh yeah, I like pink too."
It was a simple little package with a profound effect.
Monday, June 14, 2010
Friday, June 11, 2010
Dr. Aycock measured me for the tissue expanders and we talked about whether going directly to implants versus starting with the expanders was an option. She said I would be a candidate for going straight to implants but depending on whether or not I needed radiation - that would affect my skin around the implants. She said she preferred to take the reconstructive process in two stages with the expanders -- that she felt she had better results with two steps. I agreed. I didn't want to complicate things if we went straight to implants and I had to have radiation. With my luck - I would have to have radiation and then the symmetry would be lost. We went over the pre-op paperwork and notifications about the drugs I'd be receiving etc etc etc.
After Dr. Aycock was done, one of the nurses came in and we started talking about whether or not I needed to have a pre-op appointment with Dr. Kounalakis, the surgical oncologist. She left us in the room to call and verify. When she came back, she wasn't empty handed -- and I don't mean she was carrying paperwork!
The nurse, Colleen, walked in with examples of the drain bulb and catheter as well as an example of the chemo port.
She went over the drain bulb, it's proper "setting" when it's attached -- how we have to drain and measure the fluid -- ick. ick. ick. THEN -- she moved on to the chemo port. Wow. Talk about getting real. Here's how she explained it: This round, quarter sized piece sits just under your skin by your collarbone and this catheter is run through one of your arteries and down next to your heart.
Whoa - wait. Down by my heart?! And oh yeah, if you wake up and find a small incision on your neck, that was from them putting in the chemo port. They needed to make an incision so they can guide the catheter down. Holy cow.
And then she shows us how I would "plug in" via the port. Colleen whips out this device with a needle on the end that's almost an inch long and tells me they push this end into the port through your skin, and then you plug the catheter in and receive your treatment.
I about passed out! It took everything in me not to faint. Luckily I was facing the nurse and Mike was sitting behind me and he couldn't see my expression. Colleen tells me, it doesn't hurt anymore than getting your blood drawn. I guess she doesn't know that I think it hurts when I get stuck for a blood draw.
As we walked out of the breast center, Mike put his arm around me and let out a big sigh. He asked me how I was, and I answered with questioning him on how he was. He said this appointment was probably his most anxious appointment - that those devices made it really real. I agreed ... really real.
Thursday, June 10, 2010
Is that all? I can honestly say this is the LONGEST two months ever! And we all know why. =)
In honor of our 2 month "anniversary," I thought it would be appropriate to share some of our other important mile markers.
March 12, 2005 - Mike walked into my bar. Okay, it wasn't my bar, but I was waiting tables there and I was the only server on shift. So yeah, it was my bar, for the morning anyhow. He recognized me as a friend of a friend, who was a friend of his friend. We had run into each other only once before in 2004. (In a different bar, coincidentally, with those aforementioned friends.) Mike's car was in getting the windows tinted and the shop pointed him in the direction of my bar. After about 3 hours of chatting and being my only customer for the entire morning, I offered him a ride back to the shop. (Something I never offer, by the way, to random people who've I've just met.) He asked for my number ... I just looked away and was silent ... I wasn't interested in giving my number out to anyone as I was OVER guys. Being the quick thinker he is, he noticed my apprehension and offered his. I took it ... but I never intended to call.
A week passes -- March 19, 2005 - That friend of mine who knew his friend, asked me to go out with them that night. Being that I was in a constructive phase in my life, determined to go out and enjoy being single, I agreed. (Mind you - I've never before gone out with this friend of mine and her friend, who was Mike's friend. I had only gone out with my friend.) As they roll around the corner to pick me up, I open up the back door on the driver's side, and who do I see sitting in the front passenger seat? Mike.
A night passes -- March 20, 2005 - Mike and I have our "first date." The night before, he wouldn't take no for an answer and wouldn't let me be until I agreed to go out with him after my shift the next day. So we go out. He picks me up, opens my door, we go to a movie ("Guess Who") and we go to the restaurant. CONVENIENTLY, he lost his driver's license. Somehow - somewhere ... it's gone. So he asks if it would be OK if we went back to his apartment so he can look for it. Smooth right?! To this day, I still say he planned it all. BUT -- he argues it was a true accident. He never found it at his apartment and had to go through the whole process of getting a new one. (Or so he tells me. I never actually saw him go to the DMV.)
Eleven days pass -- we're pretty much inseparable -- April 1, 2005 - Mike gives me a yellow stickynote (which I still have) that says "Will you go out with me? Circle one. Yes. No."
July 1, 2005 - We get our first apartment together.
August (something) 2006 - We renew our lease.
December 27, 2006 - We break our lease and close on our house. What we didn't know yet, was that Tomo was being born on that day too.
February 2007 - We add Tomo to the family.
Somewhere in the mix of all this, between then and now - he's met my family, I've met his family, he took me to his family reunion in New Hampshire, we vacationed in St. Pete Beach, FL, I took him to my 10 year high school reunion, we vacationed in the Riviera Maya, we went to Paris, he went to Australia and Germany and Costa Rica. I've had a niece and and nephew born, he's had a niece and a nephew born. We've played Mudd Volleyball, we've played co-ed softball, we've played co-ed floor hockey. We've walked for charities and for animal shelters. We've been to Patriots games together (I've been thrown out of said Patriots game), we've been to baseball games together, countless movies, work functions, bbqs ... and the list goes on. We've lived life together, and we've lived a lot of it in just 5 years.
So on April 10, 2010 we got married - 5 years and 10 days after I circled "Yes." And on April 10, 2011 - when it's 6 years and 10 days after he gave me that fateful sticky note - May 25, 2010 will be just another part of our life.
Wednesday, June 9, 2010
What I reminded myself of is that sunshine and rain exist often at the same time. And when they exist together, it's not such a terrible thing. That's what often leads to rainbows. And even when the rain clouds have blocked out the sun completely, and they pour out everything they have for days -- the sun patiently waits in the background -- Always there, not always felt or seen, but always breaking through when the rain clouds give it the slightest opportunity.
Eventually the rain clouds passed, and Tomo and I made it home -- dry and tired from our walk. (As you can see, he was over the 2 miles!) I found a new sense of peace for this experience tonight. It might only last until the morning, or it might last longer -- but what's important is that I've arrived at a place of acceptance, if only for just a moment. Maybe it's that elusive 10% ... maybe not... but for now -- it doesn't really matter so much. The sun will find its way back out again, and I'll still be here to see it.
Tuesday, June 8, 2010
"This is Jessica, calling from Dr. Aycock's office. I just wanted to confirm your surgery for June 23rd."
"23rd? What happened to the 28th?"
The 23rd? That's not what we planned -- that's not what we talked about. That's not what I've been preparing for. That's 5 days sooner. I'm not ready for 5 days sooner. We have Red Sox tickets for the 24th. I can't go to the game right after surgery. We were suppose to go to the Red Sox game, have a nice weekend, and then go into surgery on Monday - the 28TH. I've been preparing myself for Monday. Mike cleared his work calendar for the week of the 28th. That's what we've been planning on. That's when I would be ready. Now I have to be ready on the 23rd? That makes me anxious. What if I'm not ready on Wednesday?
Before I even hung up with Jessica I started to sweat -- my anxiety started to take over. Poor Jessica. It wasn't her fault. I didn't mean to make her job harder. I just wasn't ready.
There are so many things to take care of. I have to get coverage for work. I need to start my FMLA paperwork. I guess I led myself to believe that with surgery on the 28th, I had time. I had time to let HR know, time to get my paperwork in order, time for pre-op appointments. Time to find my resolve in my decision. I think that's it. I'm not fully invested in my decision. I'm still only 90% sure. That 10% is evading me.
I don't know that that last 10% will ever come. I don't think I will ever know for sure that my decision was the right decision. Because you never know what's going to happen. You can't predict the next thing to come. I want to know that what I'm deciding is what I'm suppose to decide. I want someone to tell me - Yes, that is the correct decision. Confirming my appointment, and confirming it for 5 days sooner no less, makes my decision real. Really real.
The only alternative was July 8th. I certainly can't push surgery back to the 8th of next month. That doesn't sit well. That feels too far. That's giving the tumor an opportunity to spread ... grow ... maybe invade my lymph nodes ... if it hasn't already. By the time I go in for surgery it will be about a month since I've had any tests. Right now, the tests show it's not in my lymph nodes. But what about by the 23rd? Is a month too much time in between tests? Now the 23rd doesn't seem soon enough.
I hear this question at least 5 times a day. It makes perfect sense. I have been married for less than two months and people recognize how important this part of my life has become. Recently, I have struggled to answer this question, because I don't know how. I feel like a fraud if I smile and pretend everything is fine.
The truth is that my wife is sick. She doesn't feel sick, but she has a very serious disease that is going to change the rest of her life. I believe in my heart that she is going to be OK. I believe that she is easily going to out live me. But I also know that she is always going to have the fear of cancer in the back of her mind.
She is 29 years old. She shouldn't have to deal with this. No one should. But she has carried herself with courage and determination through this first few weeks. She has given me strength, because observing her has prevented me from feeling anger, resentment or despair. I can not feel bad for her when she doesn't feel bad for herself. I admire her more now, than ever before.
As for me, I feel distracted almost all day, everyday. When I am at work, all I can think about is her, and when I with her, all I can do is worry about how we will manage while she goes through this. When we are home, I want to talk with doctors, and when we are with the doctors, all I want is a chance to breathe. I feel like we have lost all sense of control in our life, in the matter of 2 weeks.
While I struggle in these moments, I know in reality that we still have more control than it may seem. We still have each other. We still have a bright future. We still have great friends and an extremely supportive family. We are very blessed in many, many ways.
When I first found out Melissa had cancer, I thought it was unfair. Melissa does so much for so many different people and organizations, that I immediately had a sense of anger and resentment. She donates her time and energy to a variety of different charities, many of which she has no personal connection. She dedicated herself to making a difference in leukemia, animals, kids and yes.... even breast cancer, without any sense of obligation, or personal experience. She just wanted to help. It was hard for me to fathom that a person like this could be so unfortunate, so unlucky.
That was then. Things have changed.
Since the moment she told me, my perspective has transformed to one of hope optimism and even appreciation. I believe in my heart that this experience chose her because she is someone who can handle the enormous amount of pressure that must accompany a cancer diagnosis at age 29. She was chosen because she has the mind set and perspective of someone much wiser than your average 29 year old. She was chosen because she has a bigger heart and a bigger will.
I also believe this experience will change me for the better. I needed perspective. I needed to be reminded of what is really important. This has reminded me that nothing is promised, but everything is possible.
I love Melissa and I will spend the rest of my life with her. When we arrive at the other side of this long journey, I believe we will both have a greater appreciation for our lives and our marriage. This will be a hard lesson to learn, but in a way, we are fortunate to gain this type of perspective at this point of our lives.
How is married life treating me? Being married is the best thing that has ever happened to me.
Monday, June 7, 2010
I couldn't imagine a better person for me to meet during this process. Michelle is currently 7 months pregnant with their first baby. She is where I want to be in 3 years. She is where I was suppose to be in 1 year.
She came off of Tamoxifen after 1 year to get pregnant. Depending on what they decide for their second baby, she'll go back on Tamoxifen to finish out the 5 year term. Michelle told me that she's always wanted 2 children. But they still have their fears of a recurrence with her being off of Tamoxifen for so long to conceive the second child. With tears in her eyes she told me - they didn't let cancer change anything else in their lives - they still got married and continued moving forward throughout the whole process. If they didn't have that second baby, like they had always planned, after everything she's been through, she'd still feel like she lost -- like cancer had won - because it changed her plans.
To come so far - and endure so much - and to still feel so vulnerable - that you could still lose ...
I've always told Mike that I wanted two ...
With surgery scheduled for June 28th, we have some down time on our hands. Time to change my mind is more like it. With so many things to consider, I must be driving my oncologist, surgeon and plastic surgeon crazy. I've emailed them all, left them phone messages and re-emailed them after we hung up the phone. They have a lot of patience (no pun intended!). I can be exhausting sometimes - I can admit that. Ask Mike - he'll tell you - I run through every possible scenario and research every option - and question everything before I accept an answer.
So what's been decided? For now, I'm 90% sure I'm going with the bi-lateral mastectomy. Yup, make it a double. I know - it's intense. It's a huge surgery. A huge decision. But let me lay it out for you - and for me again.
If I went the lumpectomy route, I know myself well enough to know that I won't be happy with a depression - a concave area - where the tumor used to be. Because of the size and location of my tumor, it's a very real possibility that I will have not just a crazy scar, but an indention in my chest. I would be unhappy. I would obsess over ways to fill in the dent. And unfortunately, any means of filling in the hole - would subject me to additional anxiety and biopsies. "Fat grafting" is what they called it. Injecting fat into the depressed area in an attempt to fill it back up. But that fat can cause calcifications in the tumor site - leading to unreliable mammos and more needles poking me to find out whether not it's the fat deposit or cancer.
And what if it was cancer again? What if - by having the lumpectomy - I gave the cancer a better chance at coming back than if I would have had the mastectomies? And if I did decide to have the mastectomies down the line because it did come back, reconstruction would be difficult because I would have had radiation.
I want to close this chapter of our lives as quickly as possible - and I believe that the double mastectomies will give that to me. It is drastic - aggressive - more than what seems necessary, especially because I don't feel sick so it almost feels elective - but really - it seems to be the best option for me. I don't want complications down the line if I needed to do reconstruction. I don't want to be anxious every time I feel a lump or a bump. And what if this cancer returned with a vengeance? I'm not ready to leave Mike and my family anytime soon. I'd rather have a lower chance of recurrence going into the many years ahead of me, instead of having my recurrence rate go up with every year that passes.
So for now - that's where I'm at. There is a sense of relief in having made a decision and going forward. My surgeon told me that I should just make a decision and go forward with it. And she's right. It is easier to accept a decision once it's made. I won't say that I'm fully confident in my choice, but - I've got three weeks to get there.
Friday, June 4, 2010
Mom went back home today. We dropped her off about 2 hours ago. I'm SO happy she came out. It's always better, and easier, when mom is there to help. Just like when you're little and you want your mom -- same thing. I don't think I will ever grow out of it. She's coming back around surgery time if she can. I just need to give her a date.
I was happy today, and it's been a good day (aside from the attack from my seasonal allergies). I still thought a lot about the decision before me, but today - it all didn't seem so heavy. I hope as we keep going forward, things continue this way. I know it's a long road - but for today - it's a good day.
"I didn't even have to use my AK. Today was a good day." LOL =D
Thursday, June 3, 2010
I run through all the options trying to find peace with the choices that are in front of me. As odd as it seems, the only things I've made peace with are chemo and hormone therapy. Go figure - I've made peace with chemo and hair loss and 5 years of hormones. I guess because those therapies are only temporary. But the surgery -- those choices are long lasting. Forever.
I talked with the surgeon and plastic surgeon today -- again. As they both see it, because of the placement of the tumor -- because it's much higher than usual on my chest, they feel my best cosmetic option would be a mastectomy. Now - I'm not so vain that I can't handle a visible scar on my chest. I can. My concern is the divot they said that may be visible. Because there isn't much tissue to work with at that place on my chest, the likelihood of a negative indention is very possible. How far indented? Not really sure how to tell. But the plastic surgeon said to think of it as if they're removing a ball. For as high as it is off of the chest; for as high as it is sticking up -- that is how far sunken in the divot will be. Like a circle with a line through it -- a divot and a scar. Did I mention they're also putting in a "chemo port" under my collar bone. Another incision and scar. Oh, and since they need to do the sentinel node biopsy as well, they have to cut in under my armpit. Another scar. So what's that - 3 now? Frankenstein boob. That's what it's coming down to.
The plastic surgeon said that if I did a lumpectomy and the radiation therapy, that they would need to take a skin flap from somewhere else on my body if I wanted to do a reconstruction after radiation. Because the skin on my chest would be tightened and contracted, they would need other skin to complete a reconstruction. Taking skin from my back or tummy is NOT appealing to me. It seems unnecessary.
Alternately, there's the double mastectomy -- which yields large scars, and is incredibly invasive. They'll feel different, and there may be some sensation lost.
I just don't know to make the decision that I need to make, and how to accept that decision. How to make peace with it.
The good news is - if there is any at this point - is that I'm at least getting on their calendar so there's a date set to take out the tumor. Tentatively, we're looking at 6/28. We have tickets for the Red Sox vs Rockies game on the 24th -- and well -- I wasn't about to give those up -- So I let them know the preference was the 28th. At least we know where the end of this tunnel is. I just need to learn how to interpret it's light.
Wednesday, June 2, 2010
I hope one day, the contributions to these trials help lead the way to a cure. Or at the very least, a better treatment plan for younger women who have lots more years to live.
So what. I can wear a scar. I'm not scared of that.
To me, if I have a mastectomy on one side, it doesn't make sense to not do the other side. So there's not really a "middle" type decision. It's either a lumpectomy or a double mastectomy ... in my mind anyhow.
The issue is - they can't tell me what my risk is until they see my tumor out and under the microscope. BUT -- the only way they can get the tumor out, is to do surgery. And choosing WHAT surgery to do is such a BIG decision. It's so FRUSTRATING!! It would be a more informed decision of what type of surgery I wanted to have if I knew my risk. I basically have to make a blind decision on how to remove it before I even know my risk of it coming back. I wish I just knew.
Conservative. My instincts are telling me to go conservatively. Start with the lumpectomy - dissect the tumor, tell me my risk. If I need to do a double mastectomy after we get it out and figure out my risk, then I can -- but if I decide to do the double from the starting gate, there's no way to put it all back if it wasn't necessary.
Radiation. I'm told radiation is "married" to lumpectomy. But my instincts are telling me that radiation might be too aggressive of a treatment. I'm willing to do chemo and hormonal therapies -- those treatments are sitting peacefully with me. But radiation - for whatever reason - is not. So I told the surgeon that - that I'm not sure I'm going to accept radiation. She said that if that's what I want then I should just to the mastectomy.
It's all so confusing! And frustrating. It would be so much easier if I didn't have so many options, at least it feels like that. I just don't want to be overly aggressive in treatment with a tumor that they're telling me isn't that aggressive.
I thought I knew what I wanted to do. We're going in the morning to talk to the surgeon again. To review just the surgery portion of it -- to focus on what the outcomes are. I can wear a scar across my chest. It's just a scar.
Tuesday, June 1, 2010
SO -- at the end of this whirlwind week, here we are. I have to decide the removal process. I was fully prepared to have a double mastectomy -- cut it out, close it up, and it never comes back again, and I get to skip radiation therapy and have to deal with just chemo. (Oh and I get a new "set" out of the deal.) Right?
Wrong. There's no guarantee I get to skip radiation even with a double. There's no guarantee that it won't come back. And the reconstruction process isn't as simple as when you wake up from having implants put in and everything is pretty much perfect. It's much more complex, and takes a lot of time.
So, I think we are going to start with the lumpectomy. How does that saying go, "No need to cut off the leg, because of a broken foot." (Something like that.) I kept trying to make my decision based on how much I could avoid. "If I pick option A, I get to avoid treatment 1 and 2. Or, on the other hand, if I pick option B, I get to avoid treatment 2 and 3." Lessor of two evils. What I think I need to realize is that I can't cut corners with my treatment ... not if I don't want this coming back again. I can't make a decision simply because I want to avoid doing something that might be unpleasant. What's that saying that mom's say all the time -- "I don't care if you don't want to, you have to." (Usually always followed by "Because I said so!") I may not want radiation, or even chemo for that matter, but it looks like it's something I'm going to have to face.
Dr. Borges said that I can always choose to do the mastectomies down the line, if that's what I want. But at least, starting this way, it gives them an opportunity to look at the tumor and prepare a treatment plan and it gives me time, us time, to think over the mastectomy option. By choosing the lumpectomy, I will have more follow up treatments than a mastectomy, and more anxiety if another lump appears. More ultrasounds, mammograms, biopsies, anxiety ... anxiety ... anxiety. And I have so many more years to live - so I have to think about how long I'm willing to tolerate that much anxiety.
We'll see how things go. Surgical scheduling will put my appointment roughly 2 to 3 weeks from now, just because of their schedule. I just have to call them and confirm my decision. After that, a couple weeks to heal, 12 weeks of chemo, and probably 6-12 weeks of radiation, give or take. That puts us at roughly 30 weeks.
We'll get there.
(Thanks Roo for the great picture!)