Pirate

I Took the Pirate Flag Down

I took the pirate flag down today. I’ve been meaning to do it for a week or two. One day I just looked at it and realized I didn’t need it up any more and didn’t want it up anymore. It was very large and black on my bedroom wall and dominating my space. When I needed to feel more like a badass, more like “fuck the world, I’m still here” it was there. Now life is starting to seem gentler and I’m finding a new way in it and the flag seemed very harsh on my wall.

My birthday was last week and it was weird. Part of the weirdness was I felt like I should feel like it was an accomplishment getting there, but I didn’t, and was annoyed to even feel that way. The after effects of this rough ride are annoying. Now that I’m not putting poison in my body every other week or recovering from surgery I feel like I should be able to be back to B.C. But that’s not the way it works and it’s really annoying/frustrating.

I had a bit of a wakeup call a couple of days ago when I saw this video:

It was hard to watch, but it is also inspiring and a kick in the ass. For most of us, when we hear we need to make lifestyle changes for longterm benefits, we put it off. Or we say “fuck it” and just don’t worry about it. But if I get cancer again in the near future I am going to feel like the worlds biggest asshole for not taking care of myself. I’ve already played the “it can’t happen to me” game and lost big. It would just be supremely stupid for me to go through all this and then not do what I need to do to give myself my best shot.

However it sucks having to make major lifestyle changes. It’s hard. As someone who doesn’t love eating right, exercising, or being the sober friend at happy hour (I have had a year of experience with that off and on now), it’s freaking tough. Then we can add the fact that I’m 31 so this isn’t a lifestyle many friends are sharing and then add the fact I moved somewhere that loves bad for you food and delicious drinks. It just makes me want to burry my head into a pile of pillows and not come out.

Kate Moss once said “Nothing tastes as good as skinny feels.” She was unfortunately wrong. Try Commander’s Palace’s bread pudding soufflé. Or Drago’s chargrilled oysters. Or a glass of good wine after a stressful day at work. I could go on and on…

I gave myself a free pass that got too comfortable while I was going through treatment and the immediate time after because I needed something good. When your bones ache, you’re exhausted constantly, having hot flashes, etc, food was the only good thing I had going because nothing else felt good. Now I’ve got to close the book on indulging myself and accept the fact that I got dealt a bad hand and I’ve got to work with what I’ve got. Folding would be stupid with stakes this high. So the pirate flag has come down.

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Just to show it’s not all hard times.

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Gratuitous Wally photo, i.e. how he spends most of his time at my job

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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.

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.

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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.

When the X-Ray Guy Is Hot

Today I had my MRI and chest X-Ray. No info or news, I’ll get that next Thursday when I meet with my oncologist and surgeon. It was my first MRI and probably not my last, but I would totally vote to not ever do one again if that counts for anything?

So we had to leave at 6am for my MRI which is not a time that I enjoy being awake. I wore my Thailand pants, Atlantic City Firefighter shirt (hi Norm!), and my pirate head wrap.

I got to the MRI place and completely confused the technician when I told her I brought my own drugs for the MRI (they offer sedatives). We immediately had to cover that I had a prescription for them (I mean they were in a prescription bottle, it’s not like I took them out of my pocket) and that I had someone to drive me (she thought I didn’t for absolutely no reason at all and I told her I had two people, they could take turns). I brought my own because when I had lasik they gave me Valium (never had it before) and really felt shity afterwards for it. Moving forward, I’m not going to take drugs that I’ve never taken before during possible traumatic procedures. I have a prescription for anxiety meds that I take on airplanes when they’re scary (haven’t taken one since I get diagnosed until today, so that tells you how rarely I take them), but I know how they make me feel so I took one of those. If you have to get an MRI or something that may be scary and they want you awake and drugged, get them to give you one that you can take at home and see how you feel so that when you go in you’ll be prepared or can try something else.

The outfit they give you at DHMC is really something else. Thank god for the robe. I had to leave the shirt tied in the front because I was getting my boobs scanned (I’ve had 7 strangers look at and touch my boobs since this started now), and the shirt is gigantic so it doesn’t really close enough. The pants were 3X so those closed with a big loop open where you wouldn’t want a big loop open, but luckily they give you a robe that actually closes everything off. I immediately went into the reception area and told my parents to take a photo because I knew none of you would believe that the pirate bandanna was the least ridiculous looking thing I had to wear to my MRI otherwise.

I did a new business pitch for a hospital group last year all about preserving dignity for patients and it was definitely top of mind today.

I got to keep my wedding rings on for it which made me happy. A. is finishing the bar today in New Orleans, so good to have those with me. I met an older woman while waiting (also in a styling outfit like mine, minus the pirate accent). We talked about the pirate thing and she really liked it, she’s a breast cancer survivor and also not down with the pink ribbons (she doesn’t like pink).

The MRI was unpleasant. My tech was definitely someone who went into something partially because they don’t like people, totally fine, but kind of amusing/lame at the same time when you’re the one getting an MRI. I did not get any music offered and when I asked from inside the machine she either didn’t have my mic on (I think my machine was a bit bootleg from her comments about it) or ignored me.

It’s totally uncomfortable to lay on your stomach for a 1/2 hour in a tiny space with loud noises coming at you, even with an anti-anxiety med, padding, and ear plugs. I was in there for all 30 minutes and my arms started falling asleep in the 10 minute imaging session and that was really uncomfortable/irritating. My feedback to them on this would be to count down the minutes for the longer photos so you know how long you have left (there’s no sense of time in there) and also tell you how many photos in total you have left to do. It sucks being in there with no idea of how much progress you’ve made towards escaping your pod.

After I got out I found out that my Mom had tried to poison my Dad with some sort of pre-made egg white breakfast sandwich. He said it’s going to haunt him for a long time.

Then we went to the x-ray spot about a half hour early, but they got me in quickly which was nice. The X-Ray guy was hot, which is so not a perk. (side note for those that don’t really know me: I’m happily married). But anyways, the last thing I want is for some hot dude to be prodding my boobs, it would be so awkward. Luckily I got to keep my shirt on and there was no boob prodding. To be fair, I’d also like to avoid hot chicks with nice racks prodding my boobs through this experience as well. Sorry beautiful people, I just want you to stay away from my boobs through this. Other than the horrible MRI outfit, I felt like I escaped today’s appointments with my dignity more or less intact.

The hospital sent me a guide book to breast cancer, which totally pissed me off because it’s pink and it’s a guide book. So I’ve been reading it and it’s actually really helpful and informative. It also makes me have melt downs and sob, but those don’t last that long and so far the cats aren’t judging me. It is kind of funny though to go from looking at the pink cursive and scowling to sobbing within seconds, it’s a truly bizarre experience. From what I read, my goal is to avoid Chemo. I have no idea if it will be possible, but that seems to be the one that fucks up your body long-term and makes things happen that aren’t that bad in your 50s, but would be pretty shitty in your 30s (am I in multiple 30s if I’m only 30?) Again, no idea if this will be possible since I have no idea how good or bad things are, but it makes me feel a little better to have something to focus on that I want to try and avoid.

Alright, I’m signing off and going for a horseback ride and then up the mountain in my Dad’s new four wheeler. Happy Friday.

One Down, Many To Go

Yesterday was my first visit to the cancer section of DHMC. It unsurprisingly sucked. First there was a line of people waiting to check in and all of them older than me by at least a decade. The only people near my age were there as support.

The line really bothered me because everyone in it had cancer; couldn’t they do a number system so that they’re not making a bunch of people in various stages of treatment for cancer stand around? Seriously people, help me help you.

To be fair, I went in with a bad attitude. I was there mostly to meet with the genetics people and I felt like it was a waste of my time. To also be fair, 24 hours after the meeting, I still feel like it was a waste of my time. Given that I was already tested and the further testing they could do is way more imprecise and would let me know if I’m maybe more susceptible to other cancers (mainly ones where they’ll try and talk me into preemptively taking my lady parts that I’m feeling pretty attached to currently) it’s not something I’m interested in pursuing. As I’m just starting to figure out what’s wrong with me and what my options are to fix things, I could really give a shit about preventative care for other future issues that may not even occur.

We left it with them sending more of my blood to the lab that did my original test just to make sure they didn’t mix my test with someone else (highly unlikely, but possibly the same percentage chance of me getting cancer at 30 and not having the gene, so there you go).

The worst part was that there was a mix-up and I thought I was going to meet my oncologist for the first time and it wasn’t on his schedule. I kind of lost it then. I got really frustrated, but kept it mostly reeled in because as someone recently suggested, I am trying to get through this without being a “fucking bitch”. I know it’s going to be really frustrating a lot of the time with this, but it’s also not anyone’s fault, especially the people trying to help me get better and find answers. I may need to write that down for all future appointments.

Fast forward to me after the appointment waiting to give blood and the geneticist feeling really bad and coming out to talk to me. This makes me crack and tell her it’s just overwhelming and to have something I expect to happen not happen is just hard to take right now, so she keeps talking to me to try and make it better, and I’m sitting there trying really hard not to cry and wishing she would go away. So it goes.

Each day is a roller coaster. There are parts that are angry, sad, happy, funny, and just ok. The best thing has been all of the amazing messages I’ve been getting via email and Facebook. Pretty sure I’ve received over 100 of them so far. Over 200 people have read my first blog (I google analytics because I am a huge nerd). Today I got 3 packages of pirate stuff (thank you Laine, Brent, and Aunt Tricia). Pictures to come, Mom failed me trying to use the camera on A.’s phone.

Tomorrow I’m going to my MRI and chest x-ray with a pirate bandanna on.

Thank you again to everyone sending me love, warm wishes, prayers, and funny emails.