I've been de-ported!!

So I've completed 9 days of radiation. About 20ish to go. I should be done by the end of May. I go every day (Monday through Friday). The treatment itself only takes about 15 minutes so I've been able to do it on my lunch hour. Assuming I don't get stuck at any ridiculously long stoplights (I sat for 4 whole minutes at 700 East one day. Honestly, I was beginning to wonder if the light was malfunctioning) I can make in almost exactly one hour from the time I leave my office to the time I walk back in. It's been nice to not have to use up more sick leave for this.

It's been interesting. For the first week I had the same two radiation technicians. They were both women and were really nice. I got comfortable with them. Every day I drive up to the front door of the hospital, leave my car with one of the valets, and radiation is just inside on the main floor. I check in at the reception desk, walk back to the dressing room, don one of the oh-so-lovely hospital gowns and sit down in the waiting room for approximately 30 seconds before one of my technicians come and get me and walk me back to the radiation room.

I lie down on the table and they proceed to mark me up with markers. The first two days it was with sharpies. The circle all my tatoos and then draw a bunch of other lines that I don't really get the purpose of. The third day I offered to bring in a good supply of washables and they got the hint and have been using washables on me ever since. Then they take a couple minutes to make sure I'm in the right position and they have me lined up exactly how I was the first time I came in. I'm not sure how they do it, but they say they need to have me positioned accurately down to the milliliter. Then they turn of the lights, leave the room and zap me.

It's weird though because I am so much more uncomfortable with the idea of radiation than I was with chemo. There is just something about consenting to lie on a table while someone shoots radioactive waves through my body. I try not to think about it too much while I'm lying there, but it's hard to really concentrate on anything else. The technicians leave the room completely while the machine is working. Right at the entrance there is a big red light that turns on and an alarm sounding buzzer that goes off when I'm actually being radiated to warn everyone to stay away, and yet, there I am, lying on the table, absorbing it all into my body. Yikes. But, at least I don't really seem to be experiencing any side effects yet. I was told to expect extreme fatigue (Okay, that is nothing new. I can handle that one) and one heck of a killer sunburn at the radiation site by the time I was done. So far I haven't gotten any more tired than usual and my skin is showing no sign of irritation at all. That stupid machine better be working because I'm not doing this any longer than I have to.

One more fun little bit of information. I had my port removed. This is the little device they put just under the skin in my chest before I started chemotherapy so they wouldn't have to put an IV in my hand/arm/foot for each infusion. Well, anyway, I had them take it out. When they put it in, it was done in the operating room and though I wasn't completely out, I was pretty loopy once the procedure was over. To remove it was a lot easier, I guess. They just did it right in the clinic. Neil even got to stay in the room. They gave me a local anesthetic, cut me open, separated it from the tissue that had grown around it and pulled it out. I was kind of hoping they would have a mirror on the ceiling so I could watch it, but no such luck. Dang it.

The local burned when it went in, but small price to pay for not being able to feel anything. Or so I thought. I think he started making the incision before the anesthetic had a chance to kick in. I just lied there for a few seconds trying to figure out if what I was feeling was really pain or if it was just pressure. It only took a few seconds though before I figured it out and I said as calmly as possible, "Um, am I supposed to be feeling this?" He quickly gave me some more of the numbing medicine. It was kind of a crazy sensation.

Anyway, after he got down to it, he pulled it out and applied pressure to the area where the catheter entered the vein to give it a minute to clot up. I was grateful for that. Didn't exactly feel like bleeding internally. Though a nice, big bruise would be fun to show people. Then he stitched me up. I asked him if I could keep the port. So they cleaned it up a little and stuck it in a bag for me. I think I'm going to hang it on my rear view mirror. It will help me remember. I don't want to forget any of this. Not a single thing.

Complete pathological response

That's what they call it when they believe that the chemotherapy killed all existing cancer cells. That's what I've  been shooting for and that's what they think happened. Woohoo!! Of course, they won't say that they know everything is gone, because you never know if there is a single cancer cell still floating around in your system somewhere, but what they did say was that after thorough testing of all the tissues removed during my surgery, they were unable to detect any remaining malignancy. My doctors all seemed pretty thrilled. Apparently that only happens about 10 percent of the time.

So the next step is radiation. I was still really hoping that they would decide that I didn't need it, but after literally several hours of arguing with both my medical and radiology oncologists, I finally agreed to do radiation. However I did tell them that if my dermatomyositis flared again, I would be done with them. I'd rather deal with Cancer than Dermatomyositis in a heartbeat.

My first radiology appointment was just discussing the plan (and me arguing). Nothing too exciting, but the second appointment was somewhat noteworthy. I went into a room that had a big machine that looked similar to a cat scan machine. Like a giant doughnut with a bed through the hole. I'm using the word "bed" very loosely. It was more like a skinny, hard table with a sheet draped over it.

They asked me to lie down and put a pad of some sort beneath my torso. As I lay there, it started to inflate around me and slowly started to harden. They'd created a little mold of my upper body that I would use each time to make sure that I was in the exact same position each time. Next, they needed to determine the area that needed to be radiated. They started marking me up with sharpie markers, putting little x's everywhere. Then they did what I think were several different simulations, recording the settings of the machine. After they were done with all that they took pictures of me from every angle imaginable. They were going to refer to the pictures each time to make sure my hands and arms were positioned the same way, my body was at the same angles, etc.

Last of all, they made the sharpie marks permanent. Yes, I officially have a tattoo. Several actually. They are little blue dots that outline the radiation area. I have a few family members that have tattoos. I won't mention names lest they incur the wrath of grandma, but I've got to tell you, those girls are tough stuff. I thought I'd become pretty tough through all this, but those tattoo pokes hurt like a bugger! And I only had about five. I don't think I could handle what it would take to get an entire image tattooed on your body. Maybe it was the area they were poking, or maybe I was just being a baby, but the needles looked like little thumbtacks. She'd put a little dot of blue ink on me then she stuck me with the tack. Have you ever stepped on a tack? That's what it felt like. Except you didn't step on it. You rolled over in bed and laid on it. Yup. That's what it felt like.

So, that was last Tuesday. This Tuesday I have a dry run. They go through the whole process and make sure all the settings are accurate, but you aren't actually being radiated. I guess you could call it a dress rehearsal of sorts. I think I start the real thing the next day and every week day after that for 6 to 7 1/2 weeks.  (My radiation oncologist says 7 1/2. I say 6. We're still arguing about that one.) I'm still not entirely comfortable with the idea of radiation. There are just two many unknowns about how it is going to affect the Dermatomyositis, but I guess we'll find out.  As always, I'll keep you posted.

Surgery day: Neil's side of the story.

At first, the morning seemed just like any other. Marie did not seem at all nervous or uneasy about what was about to happen.  She just worked through her morning routine checklist, same as always.

Get up. (Check)

Shower. (Check)

Tell Neil to get up. (Check)

Lay out the kids clothes. (Check)

Tell Neil to hurry because we have to leave in x amount of minutes. (Check)

Get dressed. (Check)

Make sure Neil is still moving. (Check)

Go warm up the car. (Check)

Go back in the house and get Neil. (Check)

Normal day.

We arrived at the Huntsman Hospital only a couple of minutes late.  I always figure in “doctor making you wait time,” so it’s kind of pointless to be early. Besides, really, can they start without her? The valet took the vehicle and swiftly drove away. I love valet parking. For a brief moment I can pretend that I am somebody. 

We made our way to the third floor and the nurse escorted us to a large, open room with smaller, curtained off areas.  We are guided to the corner in front of these very large windows for Marie to change in front of.  Are you kidding me?  Do they charge a peep fee on the other side?  The curtain did not even pull all the way closed and two people were sitting just across the way.  This was all very odd to me but Marie just took it in stride.  She changed and listened to all the instructions well.  I only heard bits and pieces because I was still recovering from an ear infection and was dealing with a decent amount of hearing loss.  I was nervous was going to miss something.

The first person from the medical team was Dr. Neumayer’s assistant Victoria. She came in our small curtained area and explained everything very well.  Then she marked the areas on Marie that they would be doing the procedures on.  Again, as I looked at Marie I saw she was handling it all very well. I am somebody who always worries about the “what ifs,” so I did my best to keep everything inside and maintain a positive front as much as possible.

After talking with Victoria, Marie went to the restroom, but never returned.  I waited and waited and waited.  I considered grabbing a nurse and asking them to check on her because she had been gone now for about twenty minutes or more.  I knew she had to pee in a cup, but was afraid she was freaking out. I wanted a nurse to go find her and tell her everything would be fine. Apparently no one bothered to tell me that they had intercepted her on her way back from the bathroom to take her down to have her wire put in for the surgery.  What a relief to discover she was not passed out on the bathroom floor and that I didn’t actually end up looking like an idiot because I sent nurses off looking for her.

From the curtained area we made our way to a private room with a television.  They seem to have nurses for everything. A new nurse came in and had Marie complete the “what if” paperwork. You know, do you have a living will? What do we do with remains? etc. etc. Okay maybe it wasn’t that drastic, but it was close. Then this nurse put in the IV. After she was done, the anesthesiologist also came in and discussed the “what ifs.” I am thinking this room should now be called the “enter if you dare room.”  Like the old movies.  Dun, dun daahhhhh.

After the anesthesiologist was done, they wheeled her out and that was the last I saw of her until it was all over.  I now was left to my own devices.  They left me standing there to find my way out to the waiting room.  Once in the waiting room, I checked in at the desk. They gave me a card that coincided with a LCD panel where I could watch Marie’s progress as she went from pre-op, to surgery, post-op and so on.  It really is a nice system and somehow makes you feel a little comforted.

I went down to the pharmacy to get her prescription filled. While I was there, my phone made the loud ringing sound it makes when I’ve missed a call.  It must have been ringing the whole time I was standing there. I am sure people were looking at me and thinking, “Are you going to answer it?”  I asked the pharmacist if the number was from the hospital and she said yes.  Of course, my first thought was that they had found something and I now had to make a split decision on what to do.  What would Marie want me to do? Did we talk about it? Man, what if she brought it up in one of those conversations that she went on and on and I was zoned out.  What if I made the wrong decision? I could not live with that.  I really need to listen better. I better get up stairs.

My hands were clammy as I approached the front desk.  I told them that somebody called me, but I missed the call.  I am sure they were thinking, “What a loser. What was so important that he could not take a call about his wife in surgery?” Thankfully they didn’t say that out loud, they just said that it had probably been the operating room and they would call back to surgery to get the message for me. Great. (Yes, please, could you interrupt my wife’s surgery because I could not hear my cell phone ring?)  I am an idiot.  The receptionist handed me the phone and said the nurse wanted to talk to me. A cute, perky voice is on the other side. “Mr. Erickson?” It takes me a moment to register who “Mr. Erickson” is. It’s me, not some old guy I am unfamiliar with. I respond slowly, “y e s.”  She cheerfully gives me the news that the test on the lymph nodes was negative and they were now proceeding with the surgery and it should be about an hour and half. I am only mildly relieved because we still have the rest of the surgery to go.  I need drugs. 

I decided to go up to the “Point.” Its a restaurant on the sixth floor of the hospital. I needed refreshment and a cookie. I brought a movie to watch to pass time because I do not wait well, especially by myself.  Choosing a soda was no problem. Pepsi or Coke. But when it came to a cookie, I crumbled.  Do I want a snickerdoodle? Calming cinnamon and sugar, melt-in-your-mouth? Or maybe an M&M chocolate chip cookie? Fun with a smile? Or, a frosted green sugar cookie? It just exudes spring, happiness and sunshine and makes you want to giggle when you eat it? And finally, the lemon cookie. Bits of lemon drops crushed inside with a tart icing drizzled on top that gives you an instant sugar rush and a hug from your grandma with each bite.  How do I decide? I can’t decide. My mind is not here. Give me all four. If the over the counter drugs won’t do it, the sugar will.

A few minutes later and I’m back in the waiting room, checking out the board. There is a line that runs down the middle of the screen to mark the patients’ progress. I do not think Marie has moved.  I wander about the waiting area. I think I was making a few of the people nervous. A few of them tried to speak to me, but of course I could not hear them.  Looking back, I think they must have assumed that I was anxiously pacing back and forth waiting for the surgery to be over and just wanted to help in some way, but all I was really doing was looking for was a plug, an electrical plug. I needed to plug in my computer, watch a movie, and get my mind off things.  I finally found one, but it was buried in the carpet. I needed that movie, so I got down on all fours and pried off the cover. We have contact.  I sat down and watched the movie. Then the monitor. Then the movie. Then the monitor. Then the movie. The monitor was still saying she was in surgery when I looked up and saw Dr. Neumeyer standing in front of me. I was excited to see her. I quickly closed my computer, and she sat down beside me with a handful of grapes.

She told me everything went well.  She mentioned the lymph nodes again and said that when she removed the breast tissue that it just looked like normal breast tissue. I tried to think of questions to ask but was just more relieved than anything. In the back of my mind, I just kept thinking that everyone so far in my life that has been diagnosed with cancer has died. There has been a number of family and friends that I have had to say goodbye to, but Marie will be the first to live. I will be able to grow old and raise our children with her.  For this one moment I believe the Lord really was listening to my one prayer. 

I asked about recovery and how long it would take but I’m not sure I was really listening to the answer.  Dr. Neumeyer left and sat silently waiting until I could go back to recovery to see Marie. Again my phone beeped loudly, I missed the call.  I walked up to the desk, looked at the receptionist and said, “I really cannot hear my phone.”  She was sweet and said, “Would you like them to call me so that I can come get you?”  I gratefully accepted and she dialed the nurse. They told me Marie was in recovery, but was having a hard time waking up. It would be another 45 minutes and then they would move her back to the to the private room we started in and I would be able to come back.

I told the receptionist that I was going to go to the pharmacy to pick up Marie’s medication since it would be awhile. When I got there the pharmacist handed me Marie’s medication but told me not to give it to her as it was prescribed. She said, “If you give it to her in these doses, it will blow her liver out. We would not want that to happen.” Apparently the prescription was written wrong. She tried to contact the doctor to correct but could not get a hold of her.

When I got back to the waiting room, I was just about to sit down when I saw the receptionist jumping up and down and pointing to me and then the doors. I do not think she would have done well in charades, but I got the message. She was sweet all the same. I went back to find Marie. She was back in the “enter if you dare” room. She was hooked up to an oxygen monitor.  Meagan, my niece, called to check at the same time the nurse walked in. I quickly told her that the nurse was there so I had to go. I am sure I sounded more like, “Get off the damn phone, the nurse is here,” but that was not my intention. 

The nurse explained to me how the oxygen monitor worked and that it had to stay above 90.  When it dropped I had to tell Marie to take deep breaths or even cough.  Marie just wanted to sleep and told the nurse that but the nurse wasn’t buying it.  She wanted her out of there.  I tried to ask questions that I thought Marie would ask. I asked about her questionable prescription. She thought this was concerning.  Marie is so good at asking questions and researching things.  When I had surgery she could tell the doctors and nurses a thing or two. I think some of them had to go back to their stations and look stuff up just to come back and answer her questions.

Well I tried to keep my head. “Marie you need to take some breaths.”  Her response: “I AM BREATHING.”

“Marie just a couple more.”

“WHAT, YOU WANT ME TO GASP FOR BREATH?”

“Marie you are almost there.”

“THAT THING IS NOT WORKING!”

“Okay, I think you are close enough.”

I decided to call Meagan back and just quickly update her. 

“Hi, Meagan, yeah, she is doing okay just a little ornery.”

“I AM NOT ORNERY!”

”Thanks, Meagan. I’ll talk to you later.”

Marie started waking up a little now and was asking questions. The same questions again and again. “How many lymph nodes did they take?” Crap. That is a good question. I forgot to ask that question. “Umm, I do not know.” A few minutes later, “How many lymph nodes did they take?” I answer with same lame response. Just to make me feel worse she asks two more times. I can not remember the other two questions she kept asking over and over. I think it is time to go home.

I wheel her to the front door and out to valet service. Just as I am about to hand the valet my ticket, this elderly women darts by me, holding out hers.  Marie is sitting in a chair almost comatose, slumped over with her coat over her.  Yes, some privileges come with being elderly, but I think she was stretching it a bit. Since Marie was cold, I wheeled her around and back into the building with the assistance of another woman, who was much more pleasant than the first. Maybe she saw what happened and was trying to make up for the first woman. I walked back outside to wait for the next one.  

We got in the car and started pulling out when Marie yells, “YOUR PHONE IS RINGING!” I really could not hear my phone ring. It was driving me crazy. It is the nurse. She was still concerned about the medication and didn’t want to send us home with the wrong label. She asked me to meet her at the pharmacy so that she could fix it.  So I left Marie in the car, in the hospital round about, only semi-conscious as ran up to pharmacy.  There was a different pharmacist so I quickly tried to explain the situation. Her response was, “We cannot take these back.”  I said, “I am not trying to give them back. They just need a new label.” She responded, “But we cannot take back medication once it is dispensed.”  I must not explain myself very well.  At that moment the nurse arrives and clears things up. Then the doctor called and after all that, just said, “Just send him home with the bottle as long as they understand not to take it the way it is written.”  Fine. My wife is comatose in the car. I need to get her home.

On the way home Marie did pretty good, we only pulled over twice because she thought she was going to be sick. The first time I pulled over was quick because she said, “Neil, pull over right now, I am going to be sick.” Once I was at a stop she said, “Why did you stop here? You’re in the middle of the road. You’re going to get hit. You better move, a bus is coming.”  I can’t win. I pull back onto the road and try again a few blocks later.  The second time I guess I was appropriately stopped.

When we got home she made it safely to her bed and slept most of the day. I woke her up to make sure she ate something, but she went right back to sleep. I am so relieved she is doing so well and seems to be handling the pain without any problem.

I would be amiss if I did not thank all our friends and family who have done so much for us.  You brought in food, words of encouragement, love and support. In case we have not already said it, and even if we have, thank you so much. For everything.   Now on to the next adventure…

Have I already mentioned that I love Percocet?

It's the day after and I'm conscious. I'll try to relate yesterday's events to the best of my ability since part of the day is a bit of a fog at best and a complete hole of nothingness at worst, then I'll try to persuade Neil to do a guest post to fill in the holes of the parts I slept through.

We got up bright and early because we needed to be there by 7:30. Our friend Darlene was an angel and came over to spend the day with the kids. When we got there, we went into a staging area of sorts with lots of beds with curtains around them. Mine was right up against the exterior windows. For those of you who don't know where the Huntsman Hospital is, it is right up on the bench of the mountains. The view was beautiful. Anyway, one of the nurses gave me a gown and bag to put my clothes in. I think Neil wanted to ask for a more private area for me to change in (someplace where we weren't right in front of a window and with a privacy curtain that actually closed all the way), but I've long since lost all sense of modesty and just proceeded to strip down and put on the breezy little hospital gown.

When I was done, Dr. Neumayer's surgical nurse, Victoria, came in to go over some paperwork with me, make sure I knew exactly why I was there and what they were going to do, and to mark me up with a sharpie. They wrote a little "yes" on all the places they were going to cut: right breast around where the tumor was, right armpit where they were removing lymph nodes, and left forearm where I had an unusual, unexplained mass that had decreased significantly during chemo. (more about that later.)

After Victoria left, another nurse came in and gave me a little plastic cup for a urine sample. Then she stepped back and just kind of looked at me. I was confused. I finally just said, "You want me to do it right here?"  "Oh, no!" she says, "lets find a restroom." Thank heavens. I guess I do have a little bit of that sense of modesty left.

After I'd given my sample, I had to go to mammography to have the wire inserted. Since there was no tumor left, Dr. Neumayer needed something to guide her to where it had been so they were going to insert a little wire through the breast that went directly to the little metal marker that had been inserted in the middle of the tumor. Then during surgery, Dr. Neumayer would cut out a cylinder of tissue all around the wire. In order to insert the wire, they had to see where the marker was. So they took me in to have another mammogram. They would use the image on the mammogram screen to help them insert the wire where it needed to go. They explained how exactly this was going to work but I think once I realized that it was going to be inserted while I was in compression, I kind of blocked everything else out. It wasn't the wire being shoved in that bothered me. The distressing part of this was that I had to be in compression while they did it. For those of you who have had a mammogram, you know that they are not anywhere near comfortable, but they are bearable because you are only squished as flat as a pancake for a few seconds. Well imagine them putting one of the girls in compression, FULL COMPRESSION, and then leaving her there for five minutes. That's how long they told me it would take. I think she got the message that I was not okay with this when my mouth dropped open and then me saying, just a little louder than I probably should have, "FIVE MINUTES!!!!! ARE YOU KIDDING ME???"

Needless to say, I didn't even feel the wire go in. I was to busy screaming in my head about the fact that my boob was literally being smashed to death. By the time they were done I was amazed that there was anything left for them to cut out. Believe it or not, that was the worst part of the whole day.

Once the wire was in and set, they took me to another little room where Dr. Neumayer injected into the breast a "radiolabeled" fluid. That's a slightly less alarming term than "radioactive," but they mean about the same thing. The reason for this is that they were trying to identify which of the 60 or so lymph nodes under my arm was the "sentinel" lymph node, or the node that the breast drained to first. If there was cancer in any of the nodes, it would be in the sentinel lymph node. In surgery, using a sort of modified geiger counter, they can identify which nodes had most of the radiolabeled fluid and remove them for testing. If there is no cancer in those, they don't need to remove any more. If they do find cancer, then they will usually remove several more to make sure they have gotten out all the nodes that contained any cancer cells. The fluid she injected burned going in. It felt like they were injecting hot sauce, but still, it was cake compared to the above mentioned boob-squishing incident.

After I was done with the boob-squishing and radioactive fluid injecting procedures, they moved me into my own private little room to wait for surgery to be ready for me. It would also be where they wheeled me after I came out of surgery too. I think it was anyway. While I was there, a nurse came in to put in my IV and my anethstesiologists also came in to tell me everything that could happen due to the anethstesia: stroke, heart failure, and a bunch of other things I can't remember. I wonder if they've ever had anyone back out after hearing all that. At least one of them said, "But just so you know, it's more likely that you will die in a car accident once you've left the hospital than it is for any of these things to happen during surgery." I wasn't sure what to say to that.

Then they wheeled me into the operating room and had me move over to the operating table. I remember noticing green lights above me. That was odd. They said they were going to put a breathing tube down my throat, but they must have put it in and taken it out while I was still under because I don't remember any of it.

Once I was all toasty under warm blankets, they put a mask over my face and told me to breathe deeply. The next thing I know, some lady is telling me to wake up and I'm thinking, "Why is she bugging me, doesn't she know I'm about to have surgery?" I just decided to ignore her. Then she says, "I need you to at least open your eyes so I know that you can." I opened one eye, looked at her, and then shut it again. A little while later I hear her talking--I think she must be talking on the phone to Neil--she says, "She's fine. She's been in recovery for about 45 minutes, but we're having a hard time getting her to wake up."  What?!? I'm done? So then I open my eyes and they decide they can wheel me back into my little room where Neil is waiting.

I think I was in that room for a while. I was really tired and just wanted everyone to leave me alone so I could go back to sleep but someone kept telling me to breathe because my oxygen was low. Then she left and neil started telling me to breathe. I just kept saying, "I AM BREATHING!!!!" I just wanted to go back to sleep. It was funny though because I remember thinking, "I don't need to breathe." Usually when you don't breathe you start to feel pain in your chest and gasp for air. I didn't. I didn't feel the need to breathe, but they kept bugging me to breathe so I did every now and then. Anything so they would just let me go back to sleep.

I guess they decided I finally had enough oxygen in my blood because they got me a wheel chair and Neil wheeled me out to the car. I was no longer in the hospital gown though so I must have gotten dressed at some point. My IV was gone too. Don't remember when that happened.

So we drive home, go in the house, I say hi to Darlene and the kids and then just walk into the bedroom, lie down and.... I'm gone.  I vaguely remember Neil coming in to give me drugs and food. I also remember Lily, at some point, pounding on the bedroom door yelling, "MomMA! MomMA!" I heard voices now and then, but that's about it. Next thing I know, it's 8 pm. I think we got home about 3:00 in the afternoon. I had Neil put Lily in bed with me and I slept until 7:30 this morning, only getting up ocassionally to take some more lovely Percocet and to throw Lily's legs off my face. I slept like the dead.

So, anyway, today is Saturday. The cleaning ladies came to clean this morning, my angel neice took Elijah and Lily for an all day play date, and my neighbors brought over dinner last night with dessert. So, my house is clean, quiet, and stocked with brownies.  Life is beautiful.

Oh, I suppose I should also say that they won't have definitive pathologial results until they can do more thorough testing that won't be complete for about another week, but according to the initial tests, they found absolutely no cancer cells anywhere in the breast tissue, none in the lymph nodes, and none in the weird, unexplained mass in my arm.

Complete pathological response was what I was going for. Won't know for sure until testing is finished, but it's definitely looking good.

Tomorrow's the day!

So I got the final word from my surgeon. She took my case to the "Tumor Board." All the doctors get together once a week to discuss particular patients and decide on a plan of action. Apparently they were all okay with the lumpectomy now, bilateral mastectomy later idea so we're on for tomorrow.

We'll be doing a lumpectomy, sentinel node dissection, and removing this little suspicious lump thingy out of my arm while they're in there. There's all sorts of details I need to put down here, but I'm tired and have to get up early for my appointment so I think I'll just post all that later this weekend.

Someone asked me today if I was scared. It hadn't occurred to me to be scared. The only thing that I keep thinking about since my nurse told me that I would be under general anethstesia was that I was really looking forward to a good nap. It's been a while since I've had one of those. This is how clueless I am. Oh well. I guess ignorance isn't always a bad thing.

A change of plans

So my surgeons have been "discussing." Dr. Massey (plastic surgeon) called Dr. Neumayer (breast surgeon) to strategize and then Dr. Neumayer called me to give me another option. After my first consult with Dr. Neumayer, I left planning on having a bilateral mastectomy on the 18th, having tissue expanders inserted and then reconstruction at a later date. After speaking with Dr. Massey the first time, I had decided to have only a unilateral mastectomy on the 18th and then have the other breast removed at the same time that I have reconstruction. That way I would only have to deal with the discomfort of one tissue expander instead of two. But, now they were suggesting that on the 18th I have only a lumpectomy, go through radiation, wait my six months and then meet with Dr. Massey to have both breasts removed and reconstruction in the same surgery. They thought this would be a good way of me avoiding the tissue expanders altogether.

If my reconstruction was being done in the same surgery as the mastectomy, tissue expanders wouldn't be necessary, but since there will be a period of approximately 7 months between surgeries (thanks to radiation), the tissue expanders act as place holders of sorts. Dr. Neumayer does a total skin sparing, nipple sparing mastectomy, so they need to put something in there to replace the breast tissue that was removed until it can be replaced with natural tissue from you butt or gut at the time of reconstruction.

The uncomfortable part is that they have to put the expander underneath the muscle wall (the breast tissue usually rests on top of the muscle wall). Then they slowly inflate the expander, stretching the muscle to form a breast mound. After several weeks of stretching (ouch!) they pull out the expanders and put in implants. But I'm not using implants. I have now finally identified one good thing that has come of being on super doses of steroids for more than a year: I have plenty of my own natural tissue to use so I don't have to put in implants. Plenty. Enough to share even. So, if there are any skinny women out there that are in need of breast reconstruction and are uncomfortable with the idea of implants, I'd be happy to volunteer as a donor. Dr. Massey asked me which area of my body I would like her to take the tissue from. I just told her to take her pick.

So anyway. I think that is the plan. For now anyway. Doing a lumpectomy now and saving everything for later so I can do everything at the same time will save me in a lot of ways. I'll be combining two major surgeries into one. That should cut back on recovery time, time off work, and keep the number of days that I have lifting restrictions to a  minimum. (Not sure how I'm going to survive six plus weeks of a toddler hanging on to my legs screaming "UP PEEES!  UP PEEES!" without being able to pick her up.)

So that's the latest. I think I've figured out what I'm doing. One way or another, I'm having some sort of surgery on Friday. 

I tested negative.

I got the results back from my genetic testing. They were negative. So, this is good for a few different reasons. One, testing postive would have meant that there there was a 50 to 80 percent risk of me developing cancer in the other breast eventually, necessitating a bilateral mastectomy instead of a unilateral. This doesn't actually change much for me since I'm pretty sure I'm going with bilateral anyway. Two, a positive would have meant I had a really high risk of ovarian cancer in the future. If it had been positive, I would have had to have my ovaries removed at some point in the very near future. That I wouldn't care too much about either at this point, other than it would be just one more surgery. Three, and this is the one that I was most interested in, a negative means that my daughter and sisters and neices and maybe even cousins are probably also negative meaning they don't have to worry about having mammograms and breast MRIs at 25 years old.

So, I'm glad I did it. Hopefully it brings a little peace of mind to some of my family members as well.