dartmouth

Is Getting A Re-Boob A Thing?

So I got some surprising news recently. The place that I have been wanting to get my surgery done by and assumed would not be able to get it done by due to cost is giving me financial aid. As A. would say: Far fucking out man! I was pretty depressed about this because the insurance situation seemed like a no-go and I assumed because of our savings that they would say ‘thanks for trying, but really that’ll be $32k+’. Instead they have offered me a deal that is expensive, but doable and especially doable thanks to a very generous family member helping out. I only applied so that I could tell myself I’d tried everything when I had to inevitably accept I couldn’t go there.

So on the long list of shitty life things going on right now, this item and associated items can now be crossed off! This place specializes in breast reconstruction and my surgeon specifically does fixing botched or rejected reconstructions. Women come from all over the country to go here, so it’s a big deal for this to work out for me. I haven’t posted until now because I’ve been waiting for the other shoe to drop. I had a followup consult with him this past week and met with the finance lady and assumed something would come up and it would be a “just kidding” that this would work out kind of deal. But it appears that it honest to god is going to actually happen.

So I’m basically having a do-over which sucks because it’ll be a long recovery. They’re going to take tissue from my hip this time since I already utilized my abdomen. It’ll be around a 6 week recovery time, plus more to feel normal in terms of flexibility and strength. I had my original reconstruction done in mid-August and I just started PT again because I’m having back problems due to my gluts being fucked up from the recovery and chemo. They’re also going to lower my abdominal scar so that I can hopefully wear a reasonable bathing suit bottom and hide it. This will also involve a belly button do-over. I’m not psyched about adding the abdominal surgery, but I figure since I’m going to be in pain and incapacitated why not try and fix it?

I think I’m in a better and worse position due to having gone through this once before. It’ll be easier mentally because I know a lot more about what’s happening to me and that I’ll come out on the other side and get through this. Last time it was a terrifying unknown. The added toughness to this is that I know how miserable it felt in the first few weeks after surgery and what a long road it was recovering physically and it’s hard to willingly put myself through that again. This is also why it’s such a huge deal to be able to go with the surgeon I want. I have so much to overcome mentally already with this, that not feeling 100% about the person performing the surgery is a pretty big thing to have to deal with.

The hospital is also amazing which is a relief after my challenges at DHMC. I will have my own room, there is a murphy bed for A. (he won’t have to spend three nights in a chair), it’s near his job, and they only do plastic surgery there and predominantly for my surgeon’s practice so I won’t have to worry about them being short staffed or having emergencies to compete for nurse attention with. It’s a pretty snazzy place too which I think I’d enjoy being taken care of in if I were going in for something more minor. It’s also only about a 10 minute drive from our home so I won’t have to endure an hour+ car ride when I get discharged this time. There’s also a free icee machine. Plastic surgeons…

My Mom is going to come stay with us for an undetermined amount of time to help me and with Wallace while I recover since A. will need to work as he just started his job. Wallace fortunately now basically takes himself out if you open the door to the yard so he’s much easier to care for these days. I’m sure our friends and family down here will also be a solid support.

I should know early this week what my surgery date options are. Sooner the better…

On related good news, I am finally starting to look more like I made a questionable decision shaving my head rather than had chemo. My eye lashes and eye brows are starting to grow back too which is reassuring. Much easier to powder on some eye brows with a foundation to stick on.

My super soft and fuzzy hair.

My super soft and fuzzy hair.

I Have No Idea What To Do

So this topic hasn’t been written about for a while. I got some news while friends were in town and then we were moving to New Orleans and it’s been a continued whirlwind. I have no idea what I’m going to do about my reconstruction fix surgery. No idea. This is also one of the more personal things that I’m going to write about, so do me a favor and don’t bring it up in person unless I do. I’m cool if you want to email about it or write comments about it online, but in person it’s a little tougher for me to talk about. It’s weird talking about my boobs with people face to face. I’m writing about it for three reasons: I don’t know what to do and am tapping the larger network for experience, I’m trying to log all of the experience with this because I think it’s educational and may be helpful to someone else, and it helps me to get it out and not keep it all bottled up.

The alternative title of this post was going to be “the surprise needle” but that was back when I had my appointment with my plastic surgeon in October and more has happened since then. So to recap: I had a tram-flap reconstruction (use google) and I was told by my physical therapist there was a lot more stiffness than there should be in my recovery and she thought there was necrosis and a cyst. Necrosis is exactly what it sounds like, some of the new tissue dying which sucks. Physically the area feels really hard and it actually keeps me from having full motion of me left arm, I have about 85% I’d say. Back in October I had my appointment with my plastic surgeon which I was very keen to do so I could find out what the situation is what my next options were. I was freaking out a bit because the only info I really had to go on was from google which is a scary place. The appointment happened to be on the same day that our good friends from SF were coming to visit so we picked them up and then headed to the hospital. We figured it would be a quick appointment and I was really looking forward to a doctor’s appointment where no one did anything bad to me for a change, like say, stick a needle in me (I’m sure you see where this is going).

So a sarcastically amusing thing about plastic surgery is that it is a money maker for the hospital so their equipment and digs are much nicer than the cancer or PT areas. The table they have you sit on is super fancy and my doctor looks like she just stepped out of a fashion magazine. I think it’s obnoxious that the physical therapy area is in a windowless basement with old equipment and this is how the other half lives. Patient care shouldn’t differ based on whether or not you perform elective surgeries. Chalk it up to another fucked up thing about healthcare in America.

Anyways, my doctor agrees that there is necrosis that will need to be removed and that there is a cyst. Then she tells us that she wants to drain it right then. Like that moment. Apparently though that was code for A. and I sit in the room for a half an hour until she came back with her nurse which sucks when you’re sitting around waiting for someone to stick a needle in you that you were expecting. Surprise needles are the worst.

So she comes back and the procedure is to use a little needle to numb the area and then a big needle to suck the fluid out. Totally gross right? She tells me not to watch because it can be disturbing, not a problem. A. watched and regretted it. It was quite a bit of liquid (I looked after she was done and was not grossed out) and kind of fascinating physically because it was visually very noticeable in a good way when it was done. Then I got a “pressure bandage” which basically means a big wad of gauze tapped down forcefully over the site. Super comfortable. Keep in mind all of this was totally unexpected and our friends are sitting outside waiting for us having no idea it would take this long or that I would end up having a minor procedure done. Welcome to my life.

Then she told me her plan for fixing it all which basically is moving things around to be in the right area and injecting fat into the area on top that is kind of a dent right now to fill it out. And no, you unfortunately can’t volunteer to give me your fat, I wish you could, trust me, I’m tired of getting poked.

Then we headed home and I got to not shower for two days to let the surprise attack heal and had to deal with dressing around the pressure bandage during that time. It was a great look. Definitely made me feel even more normal than usual.

Then unfortunately the cyst filled again and I had to make another appointment with my doctor before we left for down south. I think I saw her three days before we left it was such tight timing. Apparently what can happen (and did) is that the area can create a vacuum so that once it’s drained it pulls more fluid into the area and will just keep doing this until surgically corrected. I think I have breast cancer BINGO at this point with all the weird shit that’s happened. She said she could drain it again, but I politely declined to get stuck again with another giant needle since it would just happen again. The time in between these appointments was a little over a week.

So then we moved to New Orleans (more about that in future post). Once down here I asked my oncologist to make a plastic surgeon recommendation so I could see what my options are down here. He made two recommendations and one of them never got back to me (thanks lady) and the other is a group of plastic surgeons that specialize in reconstruction surgery, Center for Restorative Breast Surgery. This was a whole new ball game since the only plastic surgeon I’d ever met was mine through Dartmouth and connected to a hospital. This was like Nip/Tuck come to life. The first weirdness was in the very nice lobby. There is a display of rhinestone shirts that say “Restored by ….” with the surgeon’s name, all in rhinestones, and a pink rhinestone ribbon. Yes, your plastic surgeon will rhinestone sign your boobs for you. We haven’t found out if these are free with reconstruction or if you have to buy a rhinestone shirt calling out that your boob(s) are fake and the person who made them for you. Something everyone woman aspires to share.

The next clue that this was a different ball game was the fact that we first went into a very tastefully decorated small meeting room rather than an exam room to meet with my potential surgeon. He was great actually, he went to great length to explain everything to me and even sketched things out which was really helpful. My complaint with the Dartmouth plastic surgeon is that she did not explain much to me at all and I feel like I was grossly uniformed about what my surgery would entail in short term and long term. She’s good at what she does and I trust her to do it well, but being informative is not something she did well. I had no idea that my bellybutton would be gone and I’d get a new one (weird). Way more importantly, I had no idea that most of my stomach would be numb after the surgery and most likely permanently. This is something that would have caused me to think about my choices more, I probably would have made the same one, but I can’t really know that and I’m a bit resentful of it.

In his explaining things shit got nip/tuck weird. He told me that while they were doing the fat grafting they could easily do liposuction on any other areas that I wanted cleaned up. I told him I’m doing just fine. Then he asked me three different ways if I wanted bigger boobs. I told him I really like my remaining boob and would have happily kept the pair as is. Seriously, I had nice boobs. They weren’t large boobs, but they were quality. I’ve had several different lesbian friends tell me I have nice boobs which I think is the ultimate compliment, I mean who knows boobs better than lesbians? It would be like if you were a guy and your gay friend told you you had a nice looking dick. They should know right? Sorry Mom.

Anyways from there I went to the exam room and things continued to get weird. I got a nice robe to put on, disposable undies, and fuzzy socks (that I totally kept). Then I went to get photographed. This is normal for plastic surgery because they want a before photo and also there’s usually some time between surgery and the consult so they reference those to make sure they know exactly what they’re going to do. Normally you take these against the exam wall and they photograph whatever the area is without your face. Well Nip/Tuck has a photo studio. We went to the photo studio down the hall where there was a little stage for me to stand on and a background that reminded me of school pictures. They also had a professional camera with stand and a mini fireplace style heater. A. was with me the whole time which was hilarious because I’m posing in this bizarre situation with him sitting in a chair and the nurse lady taking photos. It got peak weird when I had to turn around and be totally naked because my booty is an area they may need to potentially graft fat from. Awkward. I am sort of proud that neither of us started laughing, it was a struggle.

Then I met with the doctor in the exam room and he agreed with me that I don’t need liposuction. Thanks bro. He then proceeded to tell me that the scar on my torso is slightly crooked and that he could fix that for me. Not just could, but wanted to fix that for me and showed me the photo of it and I found myself saying “sure” from politeness and weirded-outness. I am not going to do this because who the fuck cares. I don’t think anyone but a plastic surgeon is going to look at my scar and be like, um, hey, so you know that’s a little crooked right? Seriously, let someone open me up again so they can fix my crooked scar!?!? Anyways then we moved on to the good stuff. He told me that my left boob is “perfect”. That’s right. A guy who looks at and fixes boobs for a living told me my remaining boob is perfect. BAM! (That’s for everyone who thought I was being conceited earlier or overselling them). Validation. And yet another reason why getting breast cancer at 30 was fucking lame.

Ok so I’ve skipped over details from both plastic surgeons so I could do the wrap up below and not be too repetitive. Below is why I have no idea what to do and it’s really hard because there isn’t a right decision. There’s possibly a more wrong decision, but I’m not sure it’s entirely possible to figure out which one that is. I want to make a decision early next year because it can be hard to book plastic surgeons and my goal is to get surgery in late February so I can move on with my life from all this. Waiting isn’t going to make it easier, every day I face the complications from my first surgery multiple times a day and part of moving on for me needs to be getting that fixed so it’s less of an in my face thing. It’d also be sweet to get back 100% range of motion with my left arm. You know, no biggie. Here are the issues/scenarios:

1. Getting my surgery at Dartmouth with my original surgeon

Pros: She’s got a clear plan, she did the original surgery so she knows exactly what she has to work with, she is covered by insurance, I’ve been treated there and feel good about the hospital and her, she wasn’t concerned about the amount of necrosis needing another flap surgery to rectify.

Cons: She’s in NH so I wouldn’t have her for followup, she said there’s a good chance I’ll have a lot of issues with pain again and I wouldn’t have her there to manage it, I’d have to fly home still recovering, A. wouldn’t be able to stay up there with me (probably about 2 weeks), VT in February is a nightmare (cold and dark), If there were any complications with necrosis or anything else I’d be in LA and she’d be in NH, she wants to cut across my boob and I am very anti this because I don’t want a scar there (I’m going to ask her if she could do it cutting underneath like my original surgery and that will be a make or break for me)

2. Getting my surgery done in LA

Pros: The doctor was really thorough in explaining everything, my doctor would be local for pain management or followup care, I could recover at home and it’s much warmer here and light out longer, A would be around the whole time, my doctor specializes in repairing reconstruction issues, he was fine with cutting under the boob and not across (avoiding new scars)

Cons: Out of network, doctor is concerned there is too much necrosis and I’d need another flap surgery to have enough tissue (I’m not sure I want to go through with that due to the numbness but I also don’t want an implant after everything I’ve gone through to avoid that and I’m concerned that he’s up-selling based on all of the up-sells he offered in the consult)

So yeah… This continues to not get easier. If you know someone who has gone through something like this with their reconstruction I’d welcome any advice/knowledge (specifically people who had issues with reconstruction, not the general implant vs natural debate).

Diagnosis

I read back through the early posts on this roller coaster and I don’t have any about the process of finding out which has been something people have asked about, so I thought I’d share a more in-depth story of how that went.

A. and I quit our jobs in San Francisco so we could move to New Orleans which is where he grew up and is also closer to my parents. I also love New Orleans and am very excited to put down roots there. Since you rarely get time in life to take a chunk of time off without repercussions we decided to visit Thailand for a month (blogs about this), drive cross country, and spend the summer in Vermont while he studied for the Louisiana bar. Pretty damn exciting and it was an incredible experience for both of us, although we both could have easily done another month in Thailand.

We arrived in Vermont about a week before my 30th birthday. My requirement was that I did not want to celebrate on the road or away from everyone. A. actually turned 30 in Thailand, but I threw him a surprise birthday party when we got back to San Francisco to make up for it. I think it’s one of the only times I’ve ever surprised him, but then again it was almost a month after his actual birthday. Anyways, I wanted to do a friend and family day party at my parent’s house. I thought it would be a nice way to enter a new decade. I got beautiful weather and the party was a bit of a mixed bag, a bit too much of a family reunion and it was sorely missing the friends we’d spent the last 8 years with, but overall it was fun. I had some childhood and college friends make the journey and things got pretty silly by the end, which is all you can really ask for.

As mentioned before, I totally cried the night before I turned 30. It really surprised me because I had been looking forward to it. My twenties had some amazing times, but they also had some really hard times that I was through now and looking forward to being on the other side of. I was also excited for the New Orleans move, a house, kids, etc. A new adventure at 30. BUT I cried instead and A. made fun of me. I feel totally fine with sharing this because I know plenty of other people who have cried turning 30, but also I got cancer so totally justified!

About a week or two after the party A. found a lump (as detailed in Boobgate). I was kind of like “huh” and he was pretty immediately “you should see a doctor.” It was weird, but I wasn’t really worried. I get anxiety and this did not keep me up at night. I had put myself through a pretty traumatic experience earlier this year by getting tested for the BRCA 1 and BRCA 2 genes and had luckily been negative. So the chances of me having cancer at 30 were slim to none as I understood it. I did take A.’s advice and make an appointment the next day which ended up being almost a month later. It was weird even making the appointment because boobs are weird. They feel different at different times of the month and you can sometimes feel things in them, so feeling a lump inside my boob didn’t feel alarming necessarily. The person I made the appointment kept trying to get more information and me to say if it was a lump and I was like “well maybe? I don’t really know.” I was envisioning showing up to this appointment and them telling me “that’s your boob dumb ass.”

I didn’t tell anyone about what was going on, it was just me and A. I was really confident that it was nothing and just didn’t want to get people freaked out, especially with my family history (Mom has had it twice and Grandmother passed away at 38 from it, and some additional members too). It’s not a casual subject in this family. So I thought about it frequently and poked at it quite a bit, but I kept it quiet. The hardest time was when we went to NYC for fourth of July with two of our best friends from SF, but again, I thought it was nothing and I was also recovering from bronchitis so that was the hot story at the time.

So I went to my appointment alone. A. was studying for the bar and I was also going to go and take my little cousins to the movies afterwards and didn’t want to waste time by having to drop A. off at home. And again, I thought it was nothing. I also know enough about the medical process that they were going to tell me one of two things: 1. That’s your boob dumb ass 2. You need to come back so we can run some tests. No one was going to tell me I had cancer in that first meeting, so I didn’t see the point of bringing A. or telling anyone about it.

I actually felt relieved when the RN told me that it was something. I haven’t had my boobs my whole life, but we’ve spent a fair amount of time together at this point and I’d feel like a pretty big idiot if I made a doctors appointment to get something checked out that was always there. She was positive though that it was a cyst, which is gross, but not cancer. Basically it means there’s a fluid sack in the breast, probably would need to get removed, but harmless. So I left from there with another appointment and went to the movies with my cousins. We saw Malificent. On the way home I called a good friend and told her what was going on, but again, in the vein of “I don’t have cancer, that’s impossible, isn’t this annoying, cysts are gross.”

The most stressful thing for me during this time was praying that DHMC didn’t do an appointment phone call so my Mom would find out. We were going to Virginia for a family wedding and my plan was to tell her afterwards so that we could have a fun time at the wedding and not have this hanging over us. I knew she and my Dad would freak out and it was nothing right? I also made sure she was available to come with me to the next appointment (Tuesday after we got back) since I knew she’d insist. I just didn’t tell her what we were doing. So we went to the wedding and it was absolutely wonderful. Really great family time and bonding with my cousins who I haven’t seen in many years.

Then the drive home. Also, A. wasn’t on this trip because it was about two weeks from when he would leave to take the bar so he stayed home and studied and also took care of the menagerie. So all the drive home I was sitting there trying to figure out how to tell them and how to not get them to freak out. It’s a long drive from Virginia to Vermont so I had hours to agonize about this. Finally I said something like “Don’t freak out, but I found a lump in my breast. They’re sure it’s just a cyst, but I have to go get an ultrasound on Tuesday to check.” This falls under the large category of things that there are no easy ways to tell someone. I did my best. Mom immediately told me she was going with me and I said of course. I then tried to reassure both of them that it was nothing based on my age, test results, and previous doctor visit. Mom wanted to know why I didn’t tell her earlier and I explained that I knew nothing would happen in that initial visit and that I didn’t want to worry everyone prematurely and now I felt like she would be upset with me if I hadn’t informed her of what was going on. We all talked through it for a bit and then moved on. Poor Dad was at the wheel for this, I had planned on driving while I told them, but just couldn’t hold it in anymore.

So Mom came with me and A. stayed home at my request. I really wanted him to be able to study and not have to lose time over nothing. Mom desperately wanted to come in with me for the ultrasound, but the nurse said I was definitely old enough to be in there by myself (and I agreed). The ultrasound was traumatic because I had envisioned an ultrasound in my near future and this was very far from what I had looked forward to. At this point I’ve lost track of the number I’ve had for this, but still sad they’ve all been cancer related.

I imagine that the boob ultrasound is very similar to the baby ultrasound. They put some jelly on you and smooth the machine around on you to take photos. Not the most comfortable experience when it’s your boob. This is also when things started to get sketchy. It turned out that my lump was solid and not liquid so it couldn’t be a cyst. Not good news, but it could still very much be benign. The other issue was that the shape was abnormal. You don’t want the word “abnormal” used when looking into anything medical. It’s just not a sign that things are going well. So we ended that appointment with the scheduling of another appointment where they would biopsy my lump and check the cells.

The worst part of this was having to call Anton after the appointment and tell him that I was still in the not clear zone. I hated making him worry while he was studying and I know how I’d feel if it were him so it made me feel even worse. I really wanted to lie, but that wasn’t going to work in the long run. Everyone was more worried than me. I still felt like I had 0 percent chance of having cancer. However, now that we were up to biopsy stage it was time to tell some people.

My Mom reached out to her family and I think my Dad also talked to his. I had the tough job of calling my little brother. We weren’t speaking to each other due to a pretty big blow out over a month earlier, so it was weird to be making the call. I felt strongly though that if the extended family was going to hear about this that he should know. So I called him and I reassured him that it was nothing, but had to get checked out and that I was going to be ok.

A. came for the biopsy. I think I tried to get him to stay home, but he insisted and so he came with my Mom. My Dad probably wanted to come, but I think we convinced him it would be overkill and we also wouldn’t find anything out for a few days anyways. The biopsy sucked but I did really like my doctor which is always a plus. They numb you, which hurts, and then they use this needle that shoots out and retracts back in with the cells it’s collected. It makes a really loud noise when it does it which is totally not calming. Then they’re also using the ultrasound machine at the same time to squish your boob around so they can see what they’re doing. Lovely. They make a small incision to do the needle stuff so you’re bandaged afterwards and sore for a while (story of my life after just about every doctors visit I have these days). Then I went home and waited.

This was the week before the bar in Louisiana too. A. was scheduled to leave Friday and I had the biopsy on Tuesday or Wednesday (I could totally look this up, but who cares?). Every time the phone rang everyone got freaked out. It was a long couple of days. I however still believed with 100% certainty that I could not and did not have cancer. Friday morning the call came. One of my aunts was visiting with her husband, his sister, and her husband. They were out for a hike. I was still limited in action due to the pain from the biopsy so I was hanging out at home. The doctor who did the biopsy called and told me pretty early in the conversation that it was cancer. Then I went into shock. I started to cry, but the kind where tears come down your face, but you don’t make any cry noises. I sounded pretty robotic, which she took for calm. She said something like “oh, so you kind of knew?” because of how calm I sounded, nope. No idea at all. It’s just how do you respond when you’re told something impossible is true?

I got off the phone pretty quickly and then everyone fell apart like you do when you get news like this. A. delayed his flight, still went and took and passed the bar. He offered to stay, but the hardest part about the cancer news at this point for me was every single thing I had been looking forward to was on hold and I had no idea for how long and him taking the bar was the only thing that we could move forward. I told him if he could still pass he should do it and he did. I totally would have failed.

So that was my journey in going from BC to AC. I still haven’t emotionally accepted that I have cancer, which sounds weird, but it’s true. I start hyperventilating a little and crying if I go down that thread of thought because it’s hard to accept something you firmly believe is impossible to be true. So I concentrate on getting through each day and the things I need to take care of now. I’m saving that mountain for when I get through this and it’s no longer a daily struggle.

Lines In the Sand

Today I’m getting my last AC chemo treatment and I feel on top of the world. Once I get home and it kicks in I will feel under the world, but right now I’m riding high while hooked up to my last dose of this brand of poison. I want to high five everyone.

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Inside I’m smiling, I swear.

The first dose made me feel like I couldn’t do this and want to give up, which I didn’t because I decided to get through it for A. It was brutal every day and I couldn’t see how I’d get through 7 more treatments. Thankfully each one has been easier. None of them have been easy, but they’ve gotten better. First we figured out that one of the anti-nausea meds was making me sick and that having me come in on day 4 for fluids and a re-up on the anti-nausea meds helped a lot. Then we figured out that I needed another day on what I like to refer to as the “scary” anti-nausea med (responsible for that night I didn’t sleep) and it helped again. Now my fingers are crossed as I finish my fourth and last dose of AC that it continues the easier trend. It would be helpful because a week from tomorrow I’m getting in the car and heading out for New Orleans and the planned 14 hour first leg of the drive is going to be a bit tough if I’m not feeling human.

I find myself using the phrases “feeling human” and “feel like a person” because cancer treatment takes this feeling away. It takes away choice, control, power, health, and appearance. It can reduce you on a bad day to something you don’t recognize. I relate feeling healthier and being able to eat as “feeling human”. I relate making plans and not feeling/thinking about cancer during that time as “feeling like a person.” I enjoy both of these when they happen and look forward to when they’ll be the norm. I’ve already decided that I won’t do the reconstruction surgery until after Mardi Gras. That gets to be my first big thing to look forward to after cancer that I get to be a person again and take my niece and nephew to parades and have fun and not think about cancer. It’s going to be awesome.

Today is my last chemo appointment at Dartmouth, but don’t worry, I’ve got four more days I have to come back before I leave it in the rear view mirror for 2014. There were still some sad and interesting moments today though. I had a really good PT appointment. I love my physical therapist. She is such a wonderful person and really really good at her job. I haven’t had an easy or simple recovery from my surgery and she has made a huge difference. It’s also tough being touched where the surgeries took place due to pain, numbness, and mental hangups and she makes it so easy to work with her and not even think about it. I got a little teary eyed saying goodbye to her today and I feel very fortunate that I got to work with her. I also have improved to a really good degree which makes me feel good about how things are healing. I can’t put my arm straight out and raise it up above my head, but I can get it about 70% there which is a huge improvement from when I started and awesome since I’ve done very little of the exercises outside of PT because of how I’ve felt from chemo.

Today isn’t my last day in the Infusion Suite since I’ll be here Friday to get fluids and anti-nausea meds to get me through the weekend and then Tuesday I come back for my protect my ovaries giant shot in the stomach. Always a party with me. However, I do have a story from today…

But first to put it in context, a brief blurb about insurance. I know that some family and friends are republicans that read this and that’s cool. I don’t consider myself a democrat because they’re just as corrupt, but I definitely wear my Bleeding Heart Liberal tattoo with pride. It’s on my ass in case you were wondering. So Obamacare… I am the first person to recognize that this needs work and is far from perfect (seriously, I have a certificate), but let’s move forward instead of backwards. Here are my personal experience with this that will hopefully help anyone feeling anti warm up to the idea.

1. I originally wasn’t even going to get tested for the breast cancer gene because I was worried it could be used against me as a pre-existing condition. Legally, insurance companies can no longer hold pre-existing conditions against you as a reason to not insure or charge you more. This is fucking amazing. Seriously. Fucking amazing. As someone who has breast cancer at 30 this means that I can look forward to fair health insurance for the rest of my life (as long as it doesn’t get fucked up by the politicians). This means that people with Huntington’s Disease can get insured fairly, this means that so so so many people with medical conditions that they were born with and can do nothing about can get fair access to health insurance. I love this.

2. A. and I quit our jobs so we could longterm move to New Orleans. Because of the Obamacare market place we were able to say ‘no thanks’ to our $400-500 a month COBRA insurance (although now I’d take it) and purchase insurance right away that was more affordable and tailored to our needs. A. is on low tier because he’s not paranoid like me and I’m on the gold level (thank god since I got cancer while on it) which means that I pay a lot more, but my deductible and out of pocket aren’t crazy which makes a big difference in our current situation. Being able to purchase insurance at different tiers and compare to other insurance companies is a good step in the right direction. The thing I would change about this is that it should be the same tiers for every state. I’m moving to a red state with a psycho governor (look for him in the next presidential election) so the insurance selection in Louisiana are much poorer than the ones in California. This isn’t fair. Every America deserves the same insurance opportunities. Like my insurance CIGNA covers me in Louisiana, but it isn’t offered there, so January 1st I have to get completely different insurance.

3. You have 60 days after moving to a new location before you need to change your insurance. This is saving us thousands of dollars and I can’t even put a dollar amount on the stress it would add for me to have to get new insurance mid-chemo cycle and need to get everything approved and setup in the very short time I’d have before my next treatment. We’d have to also start over on out of pocket and deductibles and then start over on those in January again. Just bad news bears. So again, this is fucking awesome.

As I said though, it’s far from perfect, but let’s not throw the baby out with the bathwater. Let’s move towards making healthcare less of a business. The hospital should not charge one person $45,000 for something because they don’t have insurance and the person with insurance get’s a discount so they and their insurance only pay $13,000. One cost for everyone and equal access to insurance. Let’s start there.

So anyways… The lady next to me in the infusion suite was hella chatty. I knew I was in trouble whe she pulled the curtain divider back. She also didn’t really have anything interesting to say, just wanted to talk and talk and talk. I wasn’t feeling too hot so I put my headphones in and checked out the new Taylor Swift album and some great playlists my friend Mark made. A. made the sacrifice and listened to this for a couple of hours. Maybe 3. Some gems during this were “how long have you been married” (completely out of the blue, no conversation was going on about this), “How old are you” (same, totally random), and the diamond from Aladdin level question “What does she have?” referring to me. YOU NEVER ASK THIS QUESTION. Never ever ever ever ever. People will volunteer this if they want to, but you never ask this in the cancer ward, let alone when people are getting hooked up to chemo. Regardless of appearances, you have no way of knowing what it is and what stage it is (see Brittany Maynard for example who looked young and healthy).

From there I finally heard something that led me to enter the conversation briefly. Moving on from inappropriate questions like, what kind of cancer does your wife have?, she moved on to sharing that she’s hoping that Republicans take over this election. I told her that I like my insurance and that Obama’s policies made it illegal for insurance companies to discriminate against preexisting conditions which will be the story of the rest of my life because of breast cancer. She then listed off 3 or 4 non-cancer conditions that she has (and I didn’t need to know) and was like, oh that’s probably me too. She was shocked that we bought Obamacare and let us know that she gets good insurance through her husband’s job. I’m sure that’s very nice. The thing that made me laugh sarcastically in my twisted little heart was then she went on about how pleased she is about her daughter being able to still be on their insurance in her 20s (another policy created in Obama’s term). Apparently he’s fucking up Isis and Ebola, so it’s time to seize control. I was bummed that we missed the opportunity to tell her I had ebola when she asked about my condition. Next time…

Welcome To Chemo Town

In Chemo Town I don’t post for almost a week because I am so laid up. For real.

I was more afraid of chemo than having cancer through most of this and unfortunately I have to say those fears feel somewhat justified now that I’m experiencing it. Like I’ve mentioned before, there’s nothing like breast cancer to make you feel like the special unique snowflake you are, and chemo is no exception. But I’m getting ahead of myself.

First I showed up to chemo feeling ready. I didn’t feel scared and I didn’t cry, pretty big steps forward for me. I took this photo as proof.

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I ain’t afraid of no chemo

The day before my first chemo treatment I went through so much with the port surgery and my first therapy appointment that I just didn’t have it in me to be super emotional anymore about it. The good thing was that the pain from the port surgery faded to soreness so that was also a huge relief after reading scary stories online about people who didn’t do well with their ports. The internet is awesome.

The first thing I do with chemo is get my port “accessed” which means they put a needle through the disc under my skin that’s attached to my vein. They numb it first, but I was pretty freaked to do this so close to the surgery of getting it put in. Luckily it wasn’t so bad. The crazy part is that in the instructions that DHMC gave me from my surgery, it is crucial that everyone in the room wear a face mask when they access the port because it’s basically a straight line to major veins and when I was getting my port accessed one of the nurses in the small room refused to put a face mask on. Straight up gave me a “fuck off” look of contempt when I asked her to and also refused to leave the room. How incredible is that? My first chemo treatment, obviously a little nervous, and someone who’s job it is to care for people like me behaves like that. I repeatedly asked her. One of the other background nurses who was not a troll bitch and wore a face mask told me helpfully “at some hospitals they don’t even wear face masks.” Super.

I was enraged leaving that. Enraged, but what can I do? No idea who to complain to. None at all. Also don’t have her name which makes it a bit hard too.

Next up I met with my Oncologist who was great. We also discussed the beginning of an exit strategy to New Orleans, mid November hopefully. We talked about what supplements are ok (Calcium and D) and when I can take my Essiac Tea during treatment. The concern is that there could be potential interactions between the supplements and chemo and going through this we all want me to get the best bang for my buck so to speak out of the chemo.

Next up was the waiting game. My oncologist has to get the results from the blood tests to order the chemo mix and then the pharmacy needs at least an hour to mix it and then I get hooked up. So I started this process around 12:15 and get into chemo at 3pm. It’s a long day.

So I get into chemo and get hooked up, different nice nurse (thank god) and come to the unpleasant realization that what had previously looked like single room transfusions are actually all doubles. Surprise! I at least got the window seat. So they start the transfusion off with a bunch of anti-nausea drugs for a half hour before chemo drugs. I think at least four anti-nausea drugs between pills and liquids. During that time the other seat in my spot got filled by a very old woman who may or may not have had some dementia going on. She started shrieking and literally moaning about how she didn’t want chemo over and over again. I started freaking out. Great start.

It was super sad, but also really not what you need for your first chemo treatment. The staff was able to move me and in my new seat I ended up behind someone (glass separators between “rooms”) yelling at someone on their cell phone about not letting people into their house. This apparently is chemo. Crazy town.

That eventually ended, I got my two chemo drugs and the lady next to me was on her first dose too so we had some camaraderie as we left.

Unfortunately all of that anti-nausea medication lasted until 7:30pm that night instead of the next day or the day after that which is what was expected by the medical professionals. More on that later.

So another update. Some of you contacted me about my registry items being all taken and I’ve been trying to figure out what I need for chemo and how to organize that. Turns out my insurance doesn’t cover doctor prescribed cranial prosthesis (aka wigs) THANKS CIGNA! And those are hard to register for without being able to try on, same with hats, and scarves. So with my friend Maia’s help again I’ve set up a donation page that I will use any proceeds towards these things and if there’s enough left over possibly on some gas money and entertainment for the hours I’ll be spending in bed and in the hospital due to chemo. I’ll be doing chemo treatments every other week until the last week of the year if all goes as scheduled.

The amount set is totally arbitrary, any amount you want to give is awesome and if you don’t want to/can’t that’s totally cool too, just wanted to put it out there: https://www.giveforward.com/fundraiser/0fy5/help-jenna-cover-some-of-the-cancer-costs-

I Prefer My Ports In A Glass

Today has been a special sucky day. I think there’s starting to be a pattern with my Mondays. Maybe it will help all of you working people to read something that lets you feel like your Monday wasn’t so bad after all. If you had a worse one, let me know so I can feel better about mine.

So I actually enjoy port because secretly I am a refined 65 year old european man. I’ve been hiding this for years. I think port is a fantastic way to end the day or follow a meal. Port aka portacath not so much.

Not sure if I’ve written about what a port is (I blame the drugs) so I apologize if I’m being repetitive. You probably have something better to do. When you’re getting chemo you have to get an IV placed each time (every other week for me) and also blood drawn before the chemo to check your blood levels. I can only have blood taken on my right side now that I’ve had some lymph nodes removed on my left. Lymph nodes help clear out your blood and assist with preventing infections and if you get a needle (or even a cat scratch) on that side it can lead to infection and swelling which can lead to lymphdema which is a life long condition that sucks. So for the rest of my life no needles, tattoos, cat scratches or blood pressure cuffs on my left arm or upper quadrant (around my breast/arm pit area).

This is important because when you keep frequently getting blood drawn from the same vein areas you can end up with scaring which can cause problems too. I also have small veins which means they’re hard to stick IVs in and chemo fucks with your blood/veins so they will get even tougher. Another fun fact is that every time they try a spot it collapses that area and they have to try a new spot. You can see why being limited with my right arm could cause some issues. So today I got put in a port. A port is a device that goes under your skin near your collar bone and connects to one of the major arteries going to your heart. There will be a test later about this.

Diagram of a port

Each time I get blood drawn, a shot, or an IV they can do it in the port and they won’t have to worry about finding a vein and it will presumably be a lot less painful for me. Please note I said presumably which is a reflection on how I feel currently. It’s a same day surgery and you’re sort of awake, I don’t remember the majority of the procedure but wasn’t technically knocked out. It’s called a “twilight sleep” which is actually an option they used to offer women giving birth. Black out babies…

I didn’t think it was going to be a big deal since my other same day surgeries haven’t been super painful. A. and I found ourselves again with me on a hospital bed and him holding my hand while they stuck in an IV. We have to stop spending our dates like this. I was sitting there silently crying about how it sucks to have cancer while trying to stop crying so I didn’t dehydrate myself and make it harder for them to find a vein. This is my life. I met a physicians assistant who was great and going to be supervising the resident (it’s a simple procedure so they let the baby doctors do it). Then I become coherent towards the end of the surgery and she wasn’t there and there was a guy overseeing the resident and telling him things like “don’t clip the knot, you clipped the knot, don’t tie it so tightly” and basically making me feel extremely uncomfortable. It came to a head when the overseeing guy said “well I mean I am a perfectionist” (in a tone of voice like he was being too tough). And I pipped up and said “me too!”. The talking stopped after that and they quickly finished up. I also couldn’t see them during any of this because they had a sheet up. I had the nurse ask the physician’s assistant to come by when I was out and I let her know that it upset me that she’d left the surgery when she said she’d be there keeping an eye on things. From her perspective everything had been ok and it was just closing up and the other guy was there to supervise. She was very nice though and apologetic. Nothing to do about it but I don’t think it should have happened.

I went home after that and slept from around 11am to 3pm, until the anesthesia wore off. Turns out this really hurts once that wears off. Worse than the biopsies did, my other same day surgeries. It’s a weird hurt too, a more stressful one because it’s like I can feel the vein which makes me feel really fragile. It also sucks that my right side now feels more out of commission than my left side since that was my good side. So it’s been a bad day. I don’t have a lot of bad days, mostly I have days with some bad sprinkled in, but today as a whole has been a bad day.

Tomorrow is chemo. So if you feel like sending me a long email about life outside of cancer world please do. I’ll have about 5 hours of sitting around at the hospital tomorrow. Fun times. Also because this has come up with a few people, we can talk about hard/stressful/bad things going on with you. It’s allowed. Me having cancer does not set the richter scale of tough life things. You are allowed to have tough life things and we can totally talk about them. I am not a one up person unless it’s being sarcastic or joking. I promise that I will not respond “well at least you don’t have cancer at 30”. Unless you really deserve it.

The one shining moment was when A. and I were driving to the hospital we had on the Lithium station on my Mom’s XM and Limp Bizkit’s “Nookie” came on. For real. It was hilarious. A. was impressed/horrified that I knew every word. But then again, both of their first two CDs are still in my high school CD case in the living room downstairs.

So you can take that cookie and shove it up your….

Update From Cancer Land

Even though I’m spending less time at the hospital, with the chemo count down it feels like I’m more entrenched in cancer land than ever. However, after the count down to chemo ends there will be a new count down which will be the count down until the end of my cancer treatment which will be a victory.

In my last post I was pretty down and updating about that. I’m still having a lot more down time than I had recently due to the chemo stress, but I’ve come up for air a bit now that the shock has worn off. I forgot to mention two good things in that post.

1. My doctors are not recommending radiation. This is pretty awesome. It means I will be done with cancer treatment after chemo and I won’t have to go through another rough period after I get through this. I was going to push very hard against this if they had recommended radiation based on my test results, and am relieved to not have to.

2. I’m triple negative which means that my cancer isn’t fed by hormones (not new news). This makes it harder to treat, but a positive is that they typically treat hormone receptive cancers with drugs for 10-15 years. These are not nice drugs and have their own side effects (one of them causes cancer for example). I’m not eligible for these which is awesome in my opinion. My stay healthy instructions are to eat healthy and exercise. Two things that have not really been a priority before, but will now have to be. Drinking is also something that has to get way cut back (not because I’m a huge lush, but because more than one glass of red wine a day is pushing it based on the Docs). Dear wine, it’s not you, it’s me. I miss you.

So after having a fair filled weekend, A. and I watched the Saints lose another game (seriously guys??? cut me a freaking break here) and then went down to Boston to get my second opinion at Dana Farber. The building was really nice and they definitely have a technology edge over Dartmouth. For example, each patient and physician gets a clip that shows where they are in the building. Great for tracking you down when you’re there all day. We just had the one appointment with oncologist Ann Partridge who specializes in young women with breast cancer and is a pretty big deal in the field and at Dana Partridge.

She gave the exact same recommendation as my oncologist at Dartmouth so that was a relief. I would have happily taken a  slightly less aggressive chemo recommendation, but this is the next best thing. It makes me feel confident that I’m moving forward in the right way. It’s hard to feel like this when you hear all of the horrible things your chemo can do to you, so every little bit helps. She told me that the reason I’m doing every two weeks which gives my body less time to recover (every three weeks is a pretty common recco), is because studies have shown that my cancer (aggressive/bane) starts to recover/grow if it’s given more time and the two weeks helps avoid that. For me that may mean more side effects because my body doesn’t have as much recovery time. I left Dana Partridge feeling confident about the direction I’m moving in. One helpful thing she mentioned was that she thinks it’s “sloppy” switching doctors mid treatment (moving to New Orleans). I was a little offended at her choice of words, but whatever. The compromise I suggested was moving down before I start the taxol chemo so that I’ll begin that with my new doctor. She thought that was a good way to go so I’m going to talk to my oncologist at Dartmouth about that timing. We could stay in Vermont through all of the treatment, but my whole decision to have chemo second was because I want to move down to New Orleans and start life again. It’s important to me and something that I think will make a difference in my recovery/attitude during treatment.

I followed up yesterday’s hospital visit with a DHMC day, wouldn’t want them to get jealous. I started off the day with a 9am chemo class with A. and my Mom. We had a nurse go over my chemos and talk through probably side effects, bad side effects, and advice on how to take care of myself. She also showed us the infusion room (comfy chair that I’ll be spending a few hours in). I appreciated that they’re mostly all in private rooms, becauseI think it would be awkward and depressing to have to sit there with someone else going through it. I hadn’t realized just how long the days are going to be. First I get my blood drawn and then I meet with my oncologist about an hour later. Then it takes about an hour and a half to get the chemo mixed, then I get my anti-nausea and chemo cocktail for an hour and a half or so. That’s at least 5 hours at the hospital for each treatment and that’s for the short treatment. The long treatment will include 4 hours of treatment on top of the blood draw, wait times, and mix times. Pretty lame.

Next up I met with my plastic surgeon resident (not my actual plastic surgeon, but the one I’ve been doing all my follow ups with). I got the ok to take a bath, wear deodorant, and get some non-underwire bras. I’m almost ready to mainstream. She also took off most of the scabs, dried skin, and surgery glue around my incision sites. Now I have scars that look pretty good instead of scabs that look scary. There are still some hanging on, but definitely a major improvement. They also gave me an old lady bra that fastens in the front and has the distinction of being the ugliest bra I’ve ever owned. Going to rectify this shortly. I also got a new binder because the old one kept coming open which was really uncomfortable and frustrating. No spanx yet.

I then went down to PT which I’d been really looking forward to because it’s supposed to help me with my pain. PT is in the basement for some reason and I found out I didn’t have an appointment and my physical therapist is on vacation until early October. So that sucked. Now A. and I have to go back Friday morning to see someone else. It really sucks because everyone has been talking up my therapist as this great person to see for the issues I’m having so it’s a pretty big let down that she’s not there. I know I should be the last person throwing stones at three week vacations, but fuck your three week vacation. Seriously.

Then I got to follow up that good news with a shot in the stomach. Sorry, two shots in the stomach. The fun never ends on cancer lane. The best part was no one had told me it was going to be a shot in the stomach, so they were surprise shots in the stomach. How was your Tuesday? The first shot was to numb the area because the second shot was a giant needle. I get to do this once a month through treatment. These shots are to make my ovaries go into hibernation so that the chemo drugs don’t try to attack them and possibly put me into permanent menopause at 30. It’s going to be shitty going through hot flashes and other glamorous side effects from this, but have to keep my focus on the end game. All of the nurses were telling me how great my scar looks and how lucky I am. I just about ran out of there and did start crying as soon as I got to the waiting room. This is what happens when you get surprise shots in the stomach.

Then we went and got ice cream. Because what the hell else are you supposed to do after a day like that?