Fuck Cancer

Hello 2015

I haven’t done one of these posts since 2012 because I got lazy with my blog, so time to start again. It’s been a banger of a year for sure. 2014 sucked but it was also awesome, it’s definitely the most complex year I’ve ever had and hope never to have again. It’s tough when you have something like a cancer diagnosis take up 1/2 the year because it’s easy to throw the baby out with the bathwater, but there were too many good things that happened to do that, so instead I’m just going to record my year’s highlights.

1. Work. I got promoted towards the end of 2013 and finally caught my title up to my experience. It was a discouraging process and I am grateful that I found an agency who recognized my experience and didn’t just string me along as I’d had happen a bit with past employers (amazing how often places love to work you far above your title, but are so reluctant to pay you for it). I was only there for three months out of 2014 but I accomplished a lot. I traveled for work more than I ever have which helped me feel more independent and see new places. I made awesome new friends and spent quality time with existing ones. I worked on probably the most complicated project I will ever work on and am really proud of how it turned out. Professionally I felt very fulfilled and sad to leave.

2. Thailand. A. and I decided since we were moving across the country we would take off for a month and bum around Thailand. It was amazing. We played with elephants, rode hundreds of miles on scooters, ate everything (except curry for me), snorkeled, swam in beautiful places, and best of all, got to see a whole new part of the world. We could have easily stayed another month and not gotten tired of it.

3. Leaving SF. This was easy and hard to do. It was easy because we’ve been talking about moving to New Orleans for most of our relationship and it was really exciting to finally be going. For me I’d reached a bit of a rut in terms of wanting to not live in an apartment anymore, get a dog, be closer to our families, and start thinking about kids. SF didn’t feel like the right place to do this and it felt like life was on hold. However, it was also so so so so hard to leave our friends and family in SF. These are the people that we grew into adults with and have been able to take for granted and enjoy their company almost the entire time we’ve lived in SF. Moving to New Orleans is not a little move and leaving everyone was really hard. I also miss burritos.

California Thanksgiving

California Thanksgiving

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Totally the best breakfast burrito in SF

4. Cross Country Trip. Our car didn’t break down this time! We got to do everything and see everything we wanted to and it was all amazing. The driving wasn’t too rough and we had great weather for the whole trip. I especially loved Portland and it will be on my list of regrets never getting to live there. Yellowstone was another huge highlight for me, I love animals. Hiking over 7 miles in Glacier was a big accomplishment for me and one I’m glad I got to do before getting laid up the back half of the year.

5. Coming home again. Although the extended circumstances sucked, I still got 5 months in Vermont where I really got to feel home again and see and do everything I could want. I reconnected with some old friends, spent lots of time with my family, and had a beautiful summer and fall.

6. Cancer. Cancer sucks. I’ve got nothing positive to say about this one. It’s still mind boggling to me that I had cancer at 30, how does that even happen? It’s insane. It has taken a lot from me in health, days, and experiences and I’ll be looking to make up for those soon. A family friend told me to look for the gifts and this is one I go back and forth on weekly/daily. Some days I think of all of the support and love I’ve gotten through this and all of the friends that have made time to see me while I’m down and out. It’s been amazing and wouldn’t have happened without this. I feel very very fortunate I have you all. However, I’d trade it all in a hot second to not have gotten cancer which I know isn’t the point, but I think it’s hard to think of it as a gift related to my diagnosis and more of a gift in my life in general (hopefully you’d all love me still with no cancer even though I’d hear from you less). Feeling grateful in relationship to cancer is an up and down experience too, sometimes I’m flooded with it and sometimes I want to tell the world to fuck off. I’m still in the thick of things though so only time will tell on how I’ll eventually reflect back on this.

Yar

Yar

7. New Orleans. We finally made it here. I feel really good about how I planned things out. In the beginning my doctors were pushing me to get chemo before surgery and I am so glad that I pushed back and did it the way I did it. Chemo was worse than surgery and I can’t imagine mentally having to go into surgical recovery after getting through this and I also think one of the reasons I’ve healed so well is that my immune system and body were in fighting shape when I had surgery which is certainly not the case now. I’d also be in the position of probably still being in Vermont where it’s cold and dark and isolating as opposed to being down here where we’re moving into our place, getting a dog, and starting a new life. Everyone’s treatment plan is different and one of the few things I feel very secure about making a decisions on is my treatment schedule. I picked the right one for me.

I usually don’t do resolutions, I’m more of a no pressure or maybe things I hope for in the new year rather than try and set up a strict list of things I probably won’t follow through on. This year is different though. Given my more fragile lease on life I think it’s appropriate to come out of this and have something to focus on. I don’t have to resolve to be more healthy because that’s a rule from my doctor. Since my cancer is triple negative (no hormone receptors) I won’t be able to take any medication to prevent reoccurrence. Those meds tend to have all sorts of fun side effects (like causing cancer) so I’m not sad about this, but it is more scary because I just have to hope my body can do a better job this time around and that the chemo worked. The only thing I can do is keep a healthy BMI through eating well, exercising, and drinking moderately. So this one doesn’t count as a resolution because I actually medically need to do it.

Anyways, my resolution for 2015 is to say “yes” to more things. I’m not a big “yes” person. I tend to not like a lot of plans and be just as happy staying in on my couch or in my bed. However I just moved to a new city and need to meet people and experience things. I also have had 5 months of having to say “no” to a lot of things because of my health and I think it’s time to reclaim my life through saying “yes”. Please notice that I said “to more things” and specifically not “to everything”. I’m not trying to be a new person, just more of a person.

We’re moving into our new place tomorrow and hopefully obtaining a puppy this weekend so 2015 is off and rolling.

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Why I Hate Pink Ribbons (Updated)

Formally known as “Why I Hate Breast Cancer Awareness Month” published 10/10

Alternate Title: It’s not about the boobs.

That’s right, I said it, I hate Breast Cancer Awareness Month. Before you all start throwing pink ribbons at me, let me explain. I’ve had breast cancer on my radar since I was a kid. My Mom lost her mother to it at a young age, my great aunt had it twice, and my Mom has had it twice, the second time resulting in a single mastectomy. Breast Cancer matters a lot to me, I live my life with this little voice in the back of my head saying “you could be next”. A couple of months ago at thirty years old I was diagnosed with breast cancer. I speak to you as a granddaughter who never got to know her grandmother, a great niece who lost her great aunt too soon, a daughter who has been afraid twice, and now a member of the club that no one wants to join struggling to fight against this disease. That’s my breast cancer resume. Oh, and I work in advertising.

Why do I hate a month devoted to this disease that’s effected my family so much? Because it “prettyfies” it. Breast cancer is not sexy, pretty, nice, funny, or cute. Breast Cancer is an ugly disease that is actually pretty scary. The women that have breast cancer are amazing, sexy, beautiful, inspiring people (guys, I’m not forgetting about you in this, but I just haven’t known any men to suffer from this and don’t want to make assumptions on how you go through this, I’m writing from what I know). When was the last time Breast Cancer awareness put an amazon on their site or ad (a woman with a single mastectomy)? Now that I’ve personally had breast cancer I can also tell you that it is not about the boobies, tatas, lumps, jugs, titties, tits, breasts, knockers, fun bags, hooters, honkers, racks, melons, bazoongas, etc. It’s about cancer. When was the last time someone with liver cancer had to see something as derogatory as “save the boobies” (or any other word listed above). Give me a fucking break. Yes the cancer is found in breasts and yes we all like breasts, men and women alike, however that doesn’t mean that our cancer needs to have a pretty pink color and cute language around it. It’s cancer and it kills people. I got a single mastectomy and am currently going through chemo and once I get through all this hell I still have a 19% chance of dying from this in the next 15 years, how cute is that?

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My abdomen and new belly button from my tram flap reconstruction. Pretty cute right?

Breast Cancer Awareness Month is also one big cash in. It belittles what people actually go through (lymphodema from radiation treatments is not cute) and helps corporations make lots of dough. Most things you buy with the wretched pink ribbon on it are not going towards breast cancer. The company makes a donation and then is able to put that ribbon on their products, making more money than they donated. Instead of telling you they donated money and letting that give them a good image to the public, they see it as a chance to cash in. I was actually asked to work on one of these projects during my career and got out of it once I expressed my views thankfully. Think before you pink.

The latest thing to piss me off is this Facebook status that has been going around for the last year:

All of us have thousand wishes. To be thinner, to be bigger, have more money, have a cool car, a day off, a new phone, to date the person of your dreams. A cancer patient only has one wish, to kick cancer’s ass. I know that 97% of you won’t post this as your status, but my friends will be the 3% that do. In honor of someone who died, or is fighting cancer, or even had cancer, post this for at least one hour.

I hated this status even before I got cancer and really hate it now. Here are some things that I have wished for since I’ve had cancer: to not have cancer (seriously, why would I wish to kick it’s ass when I could wish for it never to have happened), to be able to sleep, to not feel nauseous, for ice cream, for sushi (not allowed to eat this during chemo), that my friends were closer, that I was working, that A. didn’t have to get dragged down in this, that this wasn’t so hard, that I looked like a super model, that my boob didn’t have a dent in it, that I didn’t still get pimples at 30 (does this ever end?), that my cat would shut up, that I had a puppy, etc etc etc. Just because I have cancer does not limit me to have one wish. I am still a human being with multiple dimensions and hopes and dreams. And also using the fact that I or any one else has cancer to try and make yourself look like a good person through passive aggressively targeting your friends to copy your Facebook post and pat you on the back for posting it is disgusting. We have enough problems. If you want to passive aggressively guilt your friends about people with cancer donate some money to a worthwhile cancer charity and post about it (like the ice bucket challenge did) and encourage other people to donate.

We also need to shift gears. People know what Breast Cancer is, it’s been marketed to death. Breast Cancer Awareness month should be about how to donate to make a difference, what products are proven to raise your risk, and what laws/regulations we can ask our government to enact to help protect us and make care available for all who need it. Going through this I recommend petitioning your local representative to make fertility preservation covered by insurance for cancer patients. It’s very expensive and not something people can plan for with cancer treatment’s costs and unexpectedness. Fun fact, but they didn’t used to cover reconstruction either until people lobbied for this so this is the type of thing you can make a difference in.

So that’s my yearly rant. I would like to follow it up by saying that I know for some people there is a very personal relationship with pink ribbons, boobies, etc. Everyone heals in their own way from this awful disease and I don’t mean to pass judgement on how people personally move on, these are my own frustrations as someone going through breast cancer right now and someone who has had so many close family members take it on.

Life In Recovery

It is pretty great not having to go to the hospital every other day, like really great. My days are kind of a blur of video games (Fable), TV shows (Archer, Once Upon A Time, and the League), the occasional movie (Ghostbusters), and books (the Goldfinch). However between the pain and tiredness I’m not bored for the most part.

I had a pretty stressful couple of days after the drains were removed because the top bandage kept bleeding through, but the hospital wasn’t concerned and it’s stopped now, so I seem to be out of the woods for healing. At least I assume I am since it’s been two weeks since surgery and I feel like if something bad were going to happen, it would have happened. Showering has gone from somewhat painful and nerve wracking to normalish showering. Lots of sitting down still, but whatever I guess that will be the norm for a while. I have a binder that I wear to stand and walk that is a wrap that goes around my stomach and Velcros to tighten for support. My doctor told me I should get spanx for the support which is just weird. I mean I get that it’s a medical thing, but it is just a weird world to be living in where my doctor recommends that I get spanx. The issue is that my abdomen is weak because of the tissue and muscle moved for reconstruction so it will take a while to get back to normal there and while I’m healing I have to make sure I have some extra support. Like spanx.

I’m not where I expected to be with pain based on what the doctors said, but everyone is different so it’s just the short end of the stick and not anything to be alarmed about. I am still getting more mobile and taking more walks and doing my slightly condescending PT exercises (in how low effort they are). I mean I know my arm/shoulder is all fucked up due to surgery, but rolling my shoulders does not make me feel particularly athletic or like I’m doing a work out.

I took A. to the drive-in a couple of towns over, or rather he took me because I’m not allowed to drive on my medication, but I told him where to go. He’d never been and I thought it would be a fun way to get out of the house. It was a high schooler’s paradise. Seriously, so many high schoolers. My Mom’s car battery died about an hour after getting there, but that apparently happens a lot and the employees were able to jump it and we just left it running for the rest of the time. Also a brilliant move, going to see The Fault In Our Stars when you have cancer and haven’t emotionally come to grips with that. Good movie (also good book which I read earlier this year pre-diagnosis), but good lord was it a terrible idea to go watch it at this point and time. I can sum up my feelings with “this is unfair”. A. had a lovely ride home with me, I was in great shape.

On a happier note, my first outing outside the house besides going to the hospital was my friend Maria’s wedding. I was pretty nervous about going because it was an hour and a half drive each way and a lot of sitting up which I hadn’t been doing that much of at that point (Friday). I pushed through though and it was really wonderful. She and her husband are both great people and it was as feel good of an event as anyone could hope for. I’ve known Maria since day care and it was really wonderful getting to go to her wedding. I was pretty sore once I got home, but absolutely worth it.

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Did I mention that they got married on top of a mountain?

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Love this girl. Took off my not so hip support binder for the photo, but still sporting old lady posture.

I also found out a couple of friends from college just got engaged. As a result I’ve had this Robert Frost (my favorite famous Vermonter) quote in my head: “In three words I can sum up everything I’ve learned about life: It goes on.” Having cancer and being in Vermont makes it feel all consuming. A. and I aren’t working and don’t have many friends in the area so it really is the center of our lives. The good thing about this means that we can concentrate on getting me better and not having to juggle a lot of things, the bad thing is that it seems like our life centers around me having cancer. The engagements, weddings, and life news I get from my friends have been helping remind me that life goes on. This will end and there will be so much more to my story. It goes on.

On the cancer side though I have a couple of developments. I’ve decided to cancel my port on the 10th. I feel like I don’t know enough about it and my chemo plan hasn’t been determined so I’m going to wait before having it done. I was really gung-ho after getting stuck 7 times for my second surgery IV and I feel like that wasn’t the best time to make a decision and this needs to be something that I have the chance to discuss with my oncologist and that hasn’t happened yet. Another new development is that I’m going to Dana Farber on the 15th to meet with an oncologist for a second opinion who specializes in young women with breast cancer. I’m hoping she’ll have the same recommendation as Dartmouth because that will make my life easier, but if I needed to start treatment in Boston I could. Throughout this situation my main concerns have been living with the after effects of treatment and I feel relieved that I’ll have the chance to meet with someone who really understands what younger women are concerned about getting treated for this. I’m also having a little bit of a meltdown about how excited I am that this is happening. I just feel like life is so fucked up that I’m super excited about meeting an oncologist to talk about chemo treatment. Just one of those fucked up perspective moments in this bizarro world that I’m living in.

I also found out post surgery that I’m stage IIa for those that care about that sort of thing. It’s a good diagnosis, in that it’s early and as already knew, hasn’t spread outside lefty. I am very optimistic that I can avoid radiation and hoping that the chemo can be a lighter dose now that we know things haven’t spread.

Next weekend I’m going to the Tunbridge Fair with my cousin and the fam. Going to go check out live stock, giant vegetables, and junk food. Should be excellent 🙂

Home, Let Me Come Home

I came home Thursday afternoon. It was a rough journey. There’s a lot of road construction going on between my parent’s house and the highway so we’ve been going over the dirt roads to get to Dartmouth. This obviously wasn’t possible going home because of my fragile state. It’s seriously amazing how many road obstacles there are, like isn’t this hard enough already? Apparently not, so the 15 minute drive to the highway now takes 30-60 minutes just for kicks. Route 107 for the Vermonters out there reading this. Also Bethel, fix your goddamn roads over Lympus.

The very awesome art piece that my former co-worker Linda made for me

The very awesome art piece that my former co-worker Linda made for me

Not sure if I’ve detailed what I’ve got, so here it is to give you an idea of what moving is like for me.

They removed skin and tissue all across my stomach a couple of inches below my belly button and stitched it internally with dissolvable stitches and glued the skin together. This means that my belly is tight and I have to be careful to keep bent a bit so I’m not pulling on it. It also means there’s an incision all the way across it that I need to be careful around. There’s also the drain that goes inside that’s another inch below the incision and has a gauze pad around it to protect it. There’s also barbed wire coming out of my belly button. Ok that’s not true, but my belly button had to be detached and reattached (yeah I didn’t know that could be a thing either) so it’s looking messed up too. The belly incision doesn’t have anything over it, but I’m starting to get used to seeing it. I can’t really wear anything with a waist because I can’t have anything rubbing against it, so I’m living in the very soft robe that someone got me from my registry (thanks Maia for picking it out). The sick/hilarious part is that my stomach is the flattest it’s ever been. If you ignore the tubes coming out of me, scabs, bloody belly button, and bruising: I’m ready for Sports Illustrated.

The other surgical area is under my left arm pit. They did the mastectomy sort of underneath my left breast and all the way to the side. This is great because once I’m healed it won’t be very noticeable. It is also probably better because it it was underneath where the biopsies had been and the tumor was there would be more friction on it. The stomach area is the more sore area because it gets moved any time I move (just like Ludacris said in Stand Up), most of the time the mastectomy area isn’t painful. I also can’t really see it without a mirror. I also have a drain in that area. There’s a lot of bruising and swelling right now so after one look in the mirror, I’m going to pass on doing that for now. The word “frankenboob” comes to mind. Just a little too much for me to take in. However just looking down it looks mostly normal and I’m glad that I decided to do reconstruction with the surgery. I think it would be really hard for me to deal with if I’d decided to wait or not move forward with it. It’s good to have at least one thing that I feel sure about making the right decision on. Also there’s apparently been a little confusion around this so to clarify, they did save my nipple so no tattoos in my future there. That’s all for your nipple updates.

So I’m fragile right now and for the next few weeks at least. The ride home was extra long because we had to go mostly a non highway route to avoid dirt roads which would have really hurt. As it was, all Vermont roads have a fair amount of bumps due to the frost heaves up here. Of course all the big bumps were in the last 15-20min of the trip so I was nice and sore (get it together Pittsfield!). The worst part about all of this was my poor Dad was driving so it was like he was causing me pain (for him, not for me of course). It wasn’t an easy trip for anyone. He also thought I would be excited to be going home, but really I was scared, which deflated the happy mood a bit. Going from having professionals to take care of my every need 24-hours to being an hour away from the hospital is scary. I’m good now though, after I got through the first 24 hours without anything happening things got easier.

My and my bouquet of pirate unicorns from Jeanne

My and my bouquet of pirate unicorns from Jeanne

I managed to get up the stairs without a lot of issue and have been set up in my bedroom since then. I did go downstairs for a bit yesterday because it got too warm up in our room. I also had a solid meltdown yesterday too that had everyone good and freaked out, A. got to come home from being out for a bit to me sobbing in the living room. I am a joy to be around.

Most of the time I have my pain managed, but every now and then it gets bad and it’s hard for me and everyone here. I don’t have anything fast acting so we have to treat it and then just hang in there until things get better which isn’t easy. I also have bad mood swings which I think is a combo of pain, drugs, and the overall situation. I wouldn’t say that I’m dealing with the big picture, I just try and deal with each day so that’s kind of on the back burner. I’m making plans to see a counselor once I’m physically up for the trip back and forth and then I’m hoping they can help me work through things and figure out how to control the mood swings through treatment. Most of the time I’m kind of neutral, but randomly I’ll get really sad or really upset (like sobbing in the living room), then at other times I’ll feel really really good and energetic. I haven’t found any correlation to the drugs or anything else, it would be easier if we knew that at like 6pm I was going to be emo or at 4pm that I was going to be really happy, but no patterns. Just another thing keeping us all on our toes. When I’m feeling good I try to call people because it’s much easier for me to talk to people at these times, when I’m feeling bad I don’t answer the phone, trust me it’s better for both ends. I also try and be really verbal about how much I appreciate and love my Mom, Dad, and Anton when I’m in one of the good cycles. I hope it helps offset the times that are hard on all of us.

A. has been amazing. It’s a lot for him to be taking care of me without the aid of nurses. For example, he gave me a washcloth bath this morning in a chair that probably took a half hour and was super stressful for both of us and painful for me at some points. So about that thing about sponge baths being sexy, when you actually need them they are so not sexy at all, they’re awkward and stressful. It’s a lot of responsibility to take on all this for someone you love and I feel incredibly lucky I have him. I still have anxiety issues of being left alone (thanks again recovery room nurses) so it’s hard for him to be able to take some space even with my Mom and Dad around right now. I can’t imagine doing this without him and in some of the tough times he’s my motivation to do this at all.

One of the questions I have the hardest time is “how are you feeling?” It’s such a complicated question for me and how I’m feeling at that time isn’t really a great insight into how I’m feeling overall. I am feeling in very small ways, better each day. I have more mobility and less pain overall, but at the same time I may have serious pain at some point that’s as bad as it was when I first got home. So I am getting better, but there’s not really an adjective that I can use to describe how I’m doing. I also know it’s hard to talk to someone in my situation without asking it so no harm no foul. Another thing I wanted to address is that I am not going to get better soon. It’s not going to happen. Chemo is going to last for months and then I’ll have another surgery to fix things up after that so I totally appreciate that “get better” sentiment, but getting better soon is just not going to happen. Another tough one for all of us, it’s hard to tell someone to get better next year, but realistically that’s a better time frame for me. Otherwise you’ll have to be more specific like “I hope your belly incision gets better soon” “I hope your belly button doesn’t look like it belongs on Walking Dead soon” “I hope your drains get removed soon”, fun stuff like that.

Today was a good day mentally. There were a couple of tough moments, but overall I’ve been pretty up mentally and not a lot of pain. I also had a few visitors come through which was really great. Seeing people is pretty awesome.

The crayons and coloring books we could use if you come visit me (also from Jeanne)

The crayons and coloring books we could use if you come visit me (also from Jeanne)

Over and out…

Hospital Diaries Continued

Same disclaimer: may include some gross details, but again you’re reading my blog about going through breast cancer… Also I had a mixed experience of being in the hospital and dealing with the chaos of all the personnel that you interact with and change over. Overall I am happy I went to Dartmouth and would go through this again there and think that these issues are probably a systematic hospital problem and not location specific. However, these things happened and I’m raising my voice first here and later will be contacting the hospital about these issues and my suggestion at the end on how to better avoid them. I also don’t think that anything that happened to me was malicious or personal, but I do think that a lot of it could have been avoided. You’re intrigued now aren’t you?

Tuesday was a tough morning after waking up all night from panic attacks. I was feeling tired and very disoriented. It was not a great start therefor to have 3-4 doctors burst in doing rounds and spend about a minute and a half on me before speedily exiting again. Grey’s Anatomy led me to believe there would be more patient interaction/consideration. They didn’t do a good job of explaining who they were or what their purpose was, they did however tell me that they wanted to get me off my pain pump and maybe have me leave that day. I had been told to expect 3-5 days in the hospital, and here were these strangers telling me less than 24 of being in the hospital, still using a catheter, not having pain under control, not having yet stood up (let alone walked), and having spent the night having panic attacks that I should leave. After taking a quick look over me they speedily left the room with that bombshell. I was left stunned in their wake. I felt much more like a box being checked off on their clipboard than a person they were caring for in a hospital bed.

I told A. after they left that it was way too fast and they needed to slow down and we’d have to make them slow down next time. I accepted that they were doctors and that we needed to advocate for me, it wasn’t their responsibility to naturally give a shit about what I needed. This is the weird world that being in a hospital puts you in mentally. We were both so caught off guard and exhausted that we hadn’t had it together enough to try. Luckily the next three visits I had were from my real doctors and they were much more professional and reassuring. They talked to me like I was their patient instead of at or around me. My surgeon was pleased with how the mastectomy had gone and also really loves my new hair (it’s little things like this that can give you a big boost when you’re down, things that recognize your personhood). My plastic surgeon was a nice surprise because I thought she’d be too busy to stop by, so it really meant a lot that she made time. She answered some of my questions about the way my body looked, including that I now have a dent on my boob that I’ll need to get filled in after I finished chemo. Nothing to be concerned about and the time will also allow everything else to settle so if there’s any other superficial adjustments they need to make for symmetry they can get it all done. I’ll just need to schedule it about a month after I complete chemo and come back up to get it done. I’m sure some of you women are totally amazed how calm I am about having a dent in my boob, but honestly, I was trying to show people it because I thought it was so crazy (in an amusing way). I’d post it here, but probably not the best decision I could make professionally and A. would get pretty pissed. But I mean compared to all the different pieces involved with getting me back in action, including upcoming chemo, a little dent in my boob is incredibly far down my list of things to get my panties in a bunch about.

Lastly I had the physicians assistant from plastics come who was also great at taking me through next steps and answering questions. She had a calm demeanor that really helped me. She was actually part of the morning group, but not leading that craziness.

Me and Ted

Me and Ted (ice pack behind the neck), pain meds clearly inside me. Thank god for short hair right???

Tuesday was also when I got a nursing assistant who was just starting the job (day 2 I believe) and she was the one I mentioned that didn’t realize my drains were attached to my insides and pulled on one as she was learning how to empty it. A. informed her boss that would be the last time she interacted with them (totally not in a mean way, but in the my wife can’t be put through this way). She then later tried to do them again and I told her no way and then the next day tried to get me to let her try again. The density is mind boggling. On top of that she seemed to have no body awareness so she was constantly running into my bed and painfully jolting me (I have very fragile and tender abdomen), she didn’t have steady hands so that was nerve wracking and pain inducing depending on what she was doing, and also seemed determine to be as hands on as she could with me (of course). She was also one of those people who’s a nervous smiler and trust me that did not make me feel any warmer about her knocking me around to have her smile at me each time afterwards.

By the end of the first day with her I told her boss that I couldn’t have her coming in unsupervised any more (the latest was she’d hit my bed again and hurt me, forgotten some things I needed for the bathroom and left me painfully just standing there which I wasn’t supposed to be doing much of, and dumped a bunch of water all over my table of things including my phone and hadn’t even noticed). I completely support everyone learning, I go to a teaching hospital after all, but she was way too green and harm inducing and I just couldn’t handle any more (this was at about 4pm and she had been on me since 7am). She’d even run my bed into the wall while moving me into my new hospital room right after her boss had told her to slow down while moving my bed. I then had to reassure the other nursing assistants that I don’t have a thing against nursing assistants, overall they were great and just as capable as the RN’s for my needs. It was just specifically that I was too fragile for someone on day two of their career to be practicing on (and also I think it was pretty person specific, another day 2 LNA might have been fine). I breathed a big sigh of relief when she ended her final shift that I would be in the hospital for.

Other than that I really liked the RNs and LNAs. At the least, they were competent and attentive, the best ones were also personable and made me feel like they cared about me personally and were looking out for me. Most of the ones I connected with had two shifts with me so that helped my anxiety by having familiar faces whom I trusted and even looked forward to interacting with. I felt really high maintenance because I could do so little for myself, and they were so wonderful about taking care of everything for me and constantly checking in to make sure I was as comfortable as I could be given the circumstances. They even helped A. with a blanket and pillow for him (unfortunately there weren’t any cots available the 3 nights he stayed with me).

My Mom and Dad also stopped by and spent time with me. Tuesday morning I was elated starting at about 5am that my Dad was coming to see me, we had a really nice visit. I felt like a little kid waiting for Christmas. Tuesday afternoon Anton left to go clean our bedroom in case I was ready to go home Wednesday (we agreed before he left that there was no way in hell I was leaving Tuesday based on how I was doing physically) and my Mom spent the afternoon with me. We had multiple discussions about how I am a good delegator and would let her know when/if I needed her to do something for me. We’re still having those discussions. She did take a four-five hour shift with me Tuesday though like a champ. I never had to be alone which was really important because of my anxiety issues from Monday. Tuesday I also started walking short distances and have an idea of what walking will be like when I’m 90, slow and hunched over. I also had these leg compressors on in bed that help you avoid blood clots by applying pressure and releasing on your calves. I loved them. They felt kind of like a firm hug and helped me throughout the day feel like I was getting reassured and slightly massaged. My Mom thinks I’m crazy. 

Moving into the single room gave me more space and also a window which made a huge difference to have natural light. I also had my family put up a pirate flag on the wall in front of my bed that I could see and my “Fuck Cancer” sign. Most of the hospital staff really liked the sign.

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I had noticed a lump under my left breast earlier and the day and wasn’t sure what it was. Not the kind of surprise I was looking to see and figured it might be like the dent and need some additional work. Nothing urgent, but I wanted to be able to understand the full picture of what had gone well and what needed work later, and also what to keep an eye on. A plastics resident had stopped by earlier when I’d been leaving for a walk and told me he’d come back later (he smiled at me like he thought I had about one brain cell in my head). He never came back so I had him paged and then tried to get him to come by. He thought it would be better if I described what I was seeing over the phone rather than come see himself. Because that totally makes sense. He at last consented to try and find an intern to come by.

Luckily the guy who came by was the same plastics guy who had seen me before going into surgery and was really good talking to me like I was a person (although I tried not to let it go to my head). The lump is the muscle that was moved from my abdomen with the other tissue to create my new breast in the TRAM procedure. The swelling will go down in time, but may always have a slight lump there in the future. It’s pretty noticeable now so I was a bit freaked out. I felt really dumb though because they gave me a guide to the TRAM procedure the day I decided on it, which was also the day that A. and I had our first real meeting about my diagnosis and were in the hospital from 8am-6pm. It was a long day with back to back meetings all day with different departments. I completely forgot about my booklet after all of that and never read through it so it was a complete surprise to me to have the swollen muscle there.

Tuesday night was unfortunately really rough, but luckily I had a familiar face from a LNA I’d connected with on Monday to help get through it. I kept waking up in more and more pain, I finally hit about a 9 on the scale of 1-10 around 3/3:30am and was sobbing while everyone tried to help me. The issue was that I had to press my pain button to get the medicine, so the more I slept, the more I wasn’t keeping up with it, and I eventually hit a breaking point where I was in too much pain to catch up with the pain pump quickly. I then totally panicked as well and was sobbing which was causing more pain in the abdomen, it was rough. I felt like a child, helpless and overwhelmed by emotion. My team was awesome though and they stayed with me through it, getting me meds and talking me down, they also got the plastics on-call doctor who was the same guy who’d come to see me earlier in the night thankfully. He sat down with me and told me that although they wanted me off the pain pump, they needed to manage my pain first and that I should stay on it and keep ahead of it for now until they found something else that worked. He was really sympathetic and reassuring for me and A. I finally fell asleep around 4:30am. A. was a superhero, there was absolutely nothing he could do for me other than be there and hold my hand and that’s what he did. I’m not sure I could have kept it together like that if situations had been reversed.

The plastic docs rounded again around 6:30am and it went even worse than Tuesday morning. They were unhappy that I was still on the pain pump and I kept telling them that their colleague had okayed it and how much pain I’d been in just a couple of hours before but it was like I was speaking to a wall. They made me feel completely bulldozed and like no one was listening or cared. I just don’t get how that pain pump being removed was more important than managing my pain from surgery that had happened less than 48 hours before. To top it off, they also removed my abdominal bandage and  I didn’t understand that was what they were doing until it was off and that they weren’t going to recover it. My incisions goes across all of my stomach about 2.5 inches below my belly button, it’s pretty substantial. A heavy thing to deal with mentally to see it for the first time and have to keep seeing it when I was still recovering from my painful/panic filled night. Then they left. Communication was a huge shortcoming with them and causing a lot of issues for me.

The next thing I know, an RA or LNA (not totally sure) who I’d only briefly seen before and was not directly involved with my care came in and unplugged me from my pump. He told me the surgeons had ordered it and when I protested he told me that he would leave it in the room in case the pain got bad again and they needed to reattach it and then he left. That was around 7am. By 7:45am I was in pain again with no pain meds due until 9am and starting to get really freaked out. I paged my RN who was surprised to see my pump uplugged and when she investigated she found out that the doctors had not just had my pump unhooked, but also cancelled the order so I couldn’t get any additional pain meds regardless of pain status. This was unbelievable. They hadn’t increased my oral meds or changed them in any way, but had taken away a major part of my pain control less than 3 hours after I had been in the most pain I’d had since surgery and there was nothing I could do about it.

I had to get A. and my Dad to go out and try to talk to people about it because I was stuck in my hospital bed. It was incredibly belittling and made me feel so vulnerable to be treated like that by my doctors. They had ignored my concerns and clearly hadn’t taken much of an interest in what what happened to me just a few hours before they saw me. They hadn’t even spoken to the RN who had helped me through the night, they just found a random RN to do their bidding. Eventually my RN was able to get ahold of the doctors and get them to issue me a long acting pain med that she could give me at 8am and every 12 hours to supplement the other oral meds. She was my hero and helped me from crashing into that dark pool of pain again so shortly after I’d climbed out.

I had some visitors come by Wednesday morning which helpful mentally to get a little boost. First our main contact through the IVF process came by, she’s a really cool woman who we hit it off with. It made us feel good that she cared enough to take time out of her busy schedule to come say hello. One visitor was a friend from HS who has been a nurse (great to have someone not freaked out by my gory details) and the others two friends from college. They were also my witnesses when the plastic assistant physician came back through (she’d been with the plastic group that morning again) and I told her that my morning’s experience with plastic docs had been even worse for me and she told me that some of their jobs were to be a thorn in our side so we didn’t want to stay in the hospital too long. Let me remind you, I hadn’t been in the hospital for even 48 hours at this point. I was floored. It also felt like a slap in the face given what I had just gone through with the pain management situation.

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I think it looks like I have a weird sideways blue birthday hat on, but it’s a slide.

Once I was in better pain management, my Dad and I went for a “walk” with a wheel chair and A. went out to get some non hospital food and take a break. We were only outside a short while because it was too warm to be comfortable for me, so we went inside and I got some tea and Dad brought me up to the hospital library. I used to work in the library when I went to Dartmouth as an undergrad and I was curious if my boss was still working there. She is and it was great to see her. She handled my probably shocking news like a pro and was really supportive and great to talk to. She later on came by my room to meet A. and say hello one more time before heading home. The one thing that amazes me time and time again through this is the connections that last that I’ve made through brief times knowing people, some years and years ago.

Weds night was good because it was mostly uneventful. The nurses woke me up throughout the night for my meds; normally you’re supposed to request them as you need them, but I’d discussed with them beforehand and we’d both agreed that it made sense for them to wake me up for the meds so I didn’t fall behind the pain and have a situation like the night before. As usual, the RN and LNA were both really nice and caring and helped me make it through without anything bad happening. This helped me be ready to get out Thursday because Monday and Tuesday had both been so bad in their own way that I was afraid to go home if I couldn’t prove to myself that I could get through a night in good shape. Having that under my imaginary belt gave me the confidence that I was ready to go home and be taken care of by my family.

I’ve thought a lot about what could have helped the negative points of my stay and I think having a case manager would have really made a big difference. Someone who was there something like M-F 9-5 that I could meet with each day and contact with any questions or concerns. I didn’t feel like I had someone consistently on my team because my surgeons were the people I’d been meeting with before surgery and are both really busy people so not equipped to be my day-to-day go tos (and shouldn’t be). The RNs and LNAs change every 12 hour shift and usually work 3 days at a time (so aren’t there every day), have too many responsibilities dealing with care to handle social work, and the hierarchy with doctors causes a problem for them to be patient advocates. Someone on the administrative side that could be keeping track of me pre and post surgery and be my consistent point of contact would have been a hugely reassuring piece for me and also help take away the chaotic element of having so many different points of contact in my care for me and my family.

Down the Rabbit Hole

Yesterday was surgery number two and it went well, but was pretty rough getting to it. I couldn’t eat after midnight the night before and didn’t have surgery until 1pm, so I was a starvin’ Marvin by show time.

I had to go in at 10:50am to get injected with stuff to light up my sentinel nodes so they could remove those during the surgery and test for cancer. (Stuff=I don’t remember what it was and don’t really care). Basically these are the nodes that the fluid from the tumor is going directly to first, so that’s why they get tested. If there’s no cancer presence there it is doubtful that there would be in any other lymph nodes that are further down the chain. There can be anywhere between one and several, I had two removed. One of them was the one that was biopsied and came back clean so it’s really hopeful that it will come back negative. This would help me avoid radiation. I had to keep massaging the injection spot which is on the bottom of my boob so that it would circulate, the nurse was worried about me feeling self conscious in public, but I am so past giving a fuck.

A nice thing we got to do yesterday was bring all of the unused IVF medication back to the doctors so they can give those to people who can’t afford them. They got us all of the medication that we used donated due to our circumstances so we saved thousands of dollars. It’s nice to be able to pay some of that forward. Even the saline solution they can use to give demonstrations (boy are those fun let me tell you).

We then went over to the outpatient surgery and I got in early. I then spent the next 45 minutes with them trying to find a workable vein for an IV. The hard way. Took three different people and at least 6 attempts. It was not the way to prep for a surgery. I also had a lot of water works going on once I got into the surgery bed because this was it. No going back after this and it never seemed more real than when I was in at that bed. There’s also the added joy of strangers seeing me cry. I did a lot of staring at the wall and counting in my head, my not so patented don’ts/stop crying technique. Poor A. was there through all of this, I can’t imagine it was much fun seeing your wife be a mess and also watch people sticking her with needles repeatedly. Plus then he and my Mom had to sit in the waiting room for an hour and a half waiting for me. I didn’t have Mom come back because I thought it would be too much for me and her to see me like that.

Two of my war wounds from the sticks that didn’t work. Please note that I really don’t think this was anyone attempting to get a line in’s fault. I have had IVs and blood drawn about 7 times the week before so my veins were just not in good shape.

The team was really nice and very confident inducing (other than the IV portion), I’ve said it before and I’ll say it again, I really like my surgeon. I don’t think I could get through this without her helping me feel more confident and calm ahead of times and after. The team even signed a get well card and gave it to me after the surgery with my discharge paperwork.

Then I woke up (see above). A. thought I was joking about taking a photo, but what the hell, why not. I was pretty out of it, but got on my feet earlier than they thought I would (which should surprise no one). The surgery went really well like I said, my surgeon said I have lovely insides. I left with all the stitching done inside the skin so nothing too scary to see, just some steri strips on my abdomen and under my left arm pit. We got some indian food on the ride home which is mostly a blur for me, so I finally got to eat when we got home. I took it easy because the anesthesia can cause nausea, but I did have some apple pie and ice cream before I went to bed 🙂

The great thing was that the anesthesia lasting affects held off most of the pain and I didn’t feel sore until I woke up at 5am this morning (note to self, keep meds by the bed). I went back to Dartmouth today to meet with my surgeon before the big surgery to ask questions. I also got to see what drains look like (I’ll have these in after surgery), really sexy stuff guys. I got some special soap to use the night before and morning of. I’ll probably have a really early surgery (be halfway through before the west coast is even up) because it will be about 6 hours. I find out Friday what time it will be fore sure. Send my parents and A. texts/emails because I’m sure that will be a very long 6 hours for them. Then we all need to cross our fingers that I don’t get a roommate for my hospital stay because that will be the incredibly lame cherry to top this all off.

I’m really sore today and should be tomorrow as well per my surgeon, but hopefully after this I can start feeling better for a few days before the big surgery on Monday and then it’s a shit show.

On a closing note, the lovely art work below is from my friend Rena and this post was brought to you in part by the fine people that make Vicodin. Cheers.