Family

I’m Thankful for Nono

2016 was a rough year for our country. A lot of terrible and tough things have happened and a lot of people are ready to close the books on it and not look back. For me, however, 2016 is a year I will treasure forever. 2016 is when we welcomed our son into the world.

It’s been a tough journey getting to him. It started in 2014 and was derailed by a cancer diagnosis. I had to deal with the risk that chemo brings of never being able to have kids. But I was lucky and got pregnant soon after my doctor gave me the green light this year. That was followed by a pregnancy that was anything but glowing. I had trouble gaining weight due to the nausea that plagued me for almost the entire pregnancy, I was exhausted, sore, and all of the normal pregnancy challenges. I spent several hours in the hospital when I went into preterm labor, afraid and not ready. Luckily Nono decided to wait a few more weeks. We had another scare when my midwife picked up an arrhythmia and there were also concerns about his growth. After hours spent in fear limbo, we were again cleared. Finally Nono joined our family after 32.5 hours of labor, healthy and without needing a c-section.

It was love at first sight. Even though he proceeded to poop on me twice within his first few minutes of outside the womb life. Everything I had been afraid of in becoming a Mom (what about everything I would be giving up? what if I didn’t bond immediately? ) faded away and didn’t matter at all. Being a Mom is like breathing, it doesn’t require thought. My world shifted in an irrevocable way and I didn’t even feel it happen.

There are challenges. I cry pretty much every day. I think the blog “why is my son crying” could have a precursor blog for new families called “why is Mommy crying?” Sometimes it’s good, sometimes it’s hard, there’s a lot of crazy emotional surge going on post baby. The struggle is real.

There’s a lot of things you can’t prepare for. I understood I wouldn’t be getting much sleep, but it’s different knowing that in theory and living with not knowing how much sleep I’ll get in a night or when I’ll get woken up. It’s really tough. Most physically tough things you have the ability to tell yourself you just need to get through an amount of time and it’ll get better. It may be years before I can sleep in my own bed and get 8 hours of uninterrupted sleep. Luckily the reason that I’m going through sleep deprivation torture has the sweetest face and I love him with all of my heart. Once I manage to get myself up it’s all better, sometimes I sit there at 3am just looking at him as he’s fallen back asleep and marveling at how beautiful he is.

I also have an amazing partner in this that I am thankful for. He continues to take care of me through the good stuff and the tough stuff and he’s also head over heels for our beautiful son.

So thank you 2016 for changing my life in the best way possible.

img_4353

Advertisements

Technical Family

Ever heard the one about someone saying that they’re going out for a pack of cigarettes and then they don’t come back? Well family lore has it that that my Dad’s birth mother told her 5 kids she was heading to the grocery store before hitting the road.

I heard this story fairly young, I can’t remember the exact age but I knew in elementary school that Grammy and Grampy were actually my great-grandma and great-grandpa. Little kids are weird with facts so that was something that I mused over as a kid infrequently. I remember one night at my uncle (great-uncle technically)’s lake house, explaining to my friend who was spending the night, my non-traditional family tree and the story, as I knew it. It’s really no wonder that I had a friend in middle school tell me I was too weird to be friends with anymore. (more…)

Thankful

I’m split on the thankful piece. About 50% of me is very thankful and about 50% is very surly (and understandably so I believe). I’m going to try and focus on the thankful part right now.

What I’m thankful for:

1. My health. This one is a mixed bag, but I’m really thankful that I’m not sicker. I could have just as easily had cancer that had spread and I’m thankful it hadn’t. I’m thankful that it wasn’t in my lymph nodes and that even with the complications, I’ve healed well from my surgeries and haven’t had any illnesses through chemo (just knocked on wood). I’m thankful that I don’t need radiation or more chemo than I’m getting.

2. I’m thankful that the rest of my family seems to be healthy for the most part. This is a doozy and I think it would be tough on all of us if we had to worry about someone else this much too.

3. I’m thankful for A. I’m not surprised by how amazing he’s been, but I am so thankful that we found each other and decided to spend our lives together. I feel very lucky. I say “we” about almost everything I go through and have to mentally remind myself sometimes to say “I” because he’s with me every step of the way.

4. I’m thankful that my parents and I have the relationship the we do. I’m glad that I have their support and that we could live with them until we got our feet back under us. I know it’s hard for them that I’m not completing treatment where they can see me every day and I’m sorry for that, but I’m glad that we already had the relationship where we talk often.

Dinner with Mom and Dad

Dinner with Mom and Dad

5. I’m thankful for the last two visits I had with my brother and getting to meet his girlfriend who’s pretty rad.

Lil bro, me, and the lady

Lil bro, me, and the lady

6. I’m thankful for my extended family who did things like send me what I needed to be comfortably after surgery, send me an impossible 3D pirate ship puzzle, call daily for a while, fly across the country to spend time with my during chemo, take me golfing and for beers after I got diagnosed, and came by the hospital when I was staying there.

7. I’m thankful for A.’s (and now my) family who we’re now local with. We just had our first New Orleans thanksgiving together down here and it was great. I’m already looking forward to Christmas when more will be here. They’ve been so supportive from recommending an acupuncturist to taking me to the pharmacy when A. had an interview. I’ve also enjoyed how much the niece and nephew scar the crap out of our cats.

8. I’m thankful for my friends. I’ve mentioned before that I’m completely blown away by all the people who have offered their support and read this blog (I have analytics on this because I’m a total nerd). The things that people have sent have been so thoughtful, some being what I need physically, and some being what I need mentally because it makes me feel like you guys get me. You guys help me get through this impossible thing.

9. I’m thankful for the Hasenkitties. Their comfort, weirdness, and inability to know anything is wrong is what I need some days.

Neo and Myles giving me love and stare downs

Neo and Myles giving me love and stare downs

10. I’m thankful to have finally made it to New Orleans. It’s been a long road to get here.

Spanish moss on a live oak.

Spanish moss on a live oak.

11. I’m thankful to have 3 Taxol treatments left and to be chemo and cancer free in 2015.

12. I’m thankful for the puppy we’ll be getting in the not too distant future. The optimistic look on life and unconditional love is going to be a good reward for getting through this.

Not my puppies and not my photo

Not my puppies and not my photo

Apparently the last time I did this was 2011, so here I go again.

They Say You Can’t Go Home Again

I’ve identified with the Thomas Wolfe quote “you can’t go home again” since my little cousin Jessie informed me during the summer after my freshman year of college that my parents were giving my room to my little brother. After I lost my room I never felt the same about being home. 11 years later I can say that this was totally fair and that Luke deserved the much bigger and better room since he’d played second fiddle to room selection his entire life. But anyways, that’s besides the point.

I nested pretty heavily into my rooms at college. I painted one (obviously not a dorm room), and spent hours decorating and finding the right furniture to make them homey. However, I also moved constantly. There’s a point of pride at Dartmouth for those of us that move constantly. Dartmouth is on a trimester system and has summer terms so the “opportunity” to move rooms is pretty substantial. Here’s my Dartmouth/SF living history:

Dartmouth fall ’02-spring ’06
Freshmen year: Dorm all three terms
Freshmen summer: Parent’s house/football frat
Sophomore fall/winter: Dorm
Sophomore spring: Tabard room (the Closet)
Sophomore summer: Tabard room (the President’s room)
Junior fall: Panarchy room (forgot the name)
Junior winter: New Orleans (Anton’s parent’s house)
Junior Spring: Panarchy room (the Realm)
Junior Summer: off campus apartment
Senior fall: Tabard room (Social chair)
Senior winter: NYC apartment
Senior spring: Tabard room (Social Chair)
Senior summer: Parent’s house/Anton’s aunt and uncle’s in NOLA
August ’06-Spring ’07: Geary/Leavenworth apt
Spring ’07-Fall ’08: Hayes Valley apt
Winter ’08-Summer ’10: Lower Haight apt
Summer ’10-Winter ’12: Upper Haight apt
Winter ’12-Spring ’14: Buena Vista Park apt

So in the last 12 years I have had 18 homes. 11 of these have been with A. The crazy thing is I’m not one of those people that’s ambivalent about having a home, it’s actually really important to me and plays a pretty major role on my every day happiness. I love coming home to my space. I can explain the reasoning behind each move, but I never intended to make this many moves.

With so many moves and feeling totally displaced at the beginning of each one, home became where A. was. During those years we also left for two months and traveled around Europe and most recently went to Thailand for a month and then drove cross country. With the physical location being such a temporary thing, A. became my home and feeling of comfort.

The separation of home from my parent’s house and home started that summer after college, but it’s deepened with each year. I feel like a visitor staying in what I considered my brother’s room and then while he was in high school I was constantly missing being part of the family. I mean missing, like I wasn’t there, not that I was yearning to be a part of it from college. I was like most self-absorbed college kids and perfectly happy with my bubble of 18-22 year olds thinking we were all so important and cool. But when I came back to my parent’s house it was clear that I was a visitor, I wasn’t there for the regular family meals, family events, or my brother’s high school accomplishments for the most part. I also had felt like an outsider growing up in Vermont from my tiny grade school to my tiny high school (9 kids in my grade school class and 12 in my high school class) experiences. I tried like hell to fit in, but never really accomplished that and it was rough. In middle school the girl I considered my best friend from daycare wrote me a letter telling me ‘I was too weird to be friends with’. I had similar strike outs with the cool kids in high school. And yes, even with a school that small, there are still cool kids. Having briefly gone to a reasonably sized middle school (over 100 kids in my class), I think that the smaller school is actually much tougher when you don’t fit in than the large school where there’s more people to blend into. For instance, one of the cool girls who was a year older than me had a weekly South Park watching party at her house who she invited most of our soccer team to. See the word “most” and guess if I ever got to go. So every week I’d have to hear how awesome it was from my friends and teammates and because of the tiny size of our school, there wasn’t a social alternative for weirdo me. I watched South Park with my Mom.

Since then I’ve found plenty of fellow weirdos to be friends with and am very secure in my weirdness, but the reason I mention it is that not only did I have the displaced feeling from my parent’s house, but I didn’t exactly have a social world that made me feel like home when I came back to visit. Each year there grew a greater and greater divide. A lot of people I went to school with stayed in Vermont and as we grew up into adults I lost my footing in what to social situation was. I knew where we had all stood in high school, but since I wasn’t home that often in college and then only once a year or so afterwards I missed the social landscape changing as people grew up and changed and got to know each other as adults instead of hormonal teenagers. I also had a hard time letting go of dislike I had for people who had been a dick in high school because we never had any interactions to move past that unlike the people I was friends with that lived in Vermont and got to know them outside of high school. I had a couple of people I kept in touch with and would still try and see, but that could be difficult too when my one trip home was over Christmas and we got a snowstorm so we didn’t end up being able to connect. Each year I felt more and more like a stranger in my hometown even though I still think of myself as Vermonter to the core.

I actually had a couple of nightmares when we were on our way to Vermont to spend the summer because I was worried about how I’d feel being back but being so disconnected from my old life there. It was a weird thing to go from being independent and living in SF for almost 8 years to moving back into my old room in my parent’s house at 30, even if it was just for a couple of months. To go from having my own space to inviting friends over to hangout at my parent’s house. To go from having my own phone to people having to ask my Mom to talk to me because there’s only a landline that works there. It’s weird. It’s also kind of funny. Except for the fact that my parents are not always reliable in passing messages or answering call waiting. That’s enough to make me feel like a frustrated teenager again.

Then my world got turned upside down and two months turned into five and a half. My time in my old room was probably equal to the time I spent in there my whole senior year of high school because of all the time I spent recovering from surgery and chemo in bed. My parent’s house became home again. And leaving home when it’s your parent’s house again is really hard to do.

My room became my cocoon. I felt safe there and comfortable, two things that I sorely needed going through this. My parents and I settled into a hybrid relationship where I was an adult but they were still overprotective. It’s hard not to be overprotective when your kid had cancer, but I still only need my Mom to ask if I’m sure that I don’t want a sweater once. Or not at all. It was nice though too the moments where we all enjoyed each other’s company as adults, like going out to dinner or watching the Voice. Most of us don’t get to go home again and although I would trade it all to not have cancer (seriously, if you thought I was going to say otherwise you’ve watched too many Hallmark movies), I am glad that I got to have this. The two months I was originally going to spend there went by quickly and wasn’t enough to get comfortable. The five and a half months I had there made it home and made us not have to make the time count so much, we could get comfortable and just live. It’s hard to describe, but hopefully you’re following what I’m trying to say.

Leaving was really hard. Even when what you’re heading to is exciting and good, endings are sad. It makes it even sadder because it’s combined with two other things, it’s going to be a few months before I see either of my parents again and I’m used to being able to see them whenever I want, and I can’t imagine that I’ll ever live in Vermont/home again. It’s a big goodbye/ending that I didn’t expect and I’m going mourn it for a bit. The first day I cried in 4 out of 7 states that we drove through and I’m crying now just writing about it. I have no doubt in my mind about our living in New Orleans and i am so excited for our life here, but it doesn’t make it any easier or less sad to say goodbye to my home.

So on that note, call your Mom or Dad and tell them that you love them.

 

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?

photo (2)

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.

Learning Hard Lessons

One of my mom’s best friends told me to look for the gifts in this. That can totally piss you off if it’s a bad day, but in actuality it is really a helpful and true thing to say. Getting cancer at 30 turned my life upside down and threw all of my best made plans to the wind, or at least delayed them. Some of them for years to come, some of them for months. This is one of the biggest changes my life has gone through so there has to be things to take away from this, learnings and things that made it better.

One of the major things that I’ve gotten from this is that I’m loved. I don’t have the best self confidence or view of myself and it’s been stunning to me how much of you care. Not only that you care, but you care enough to send me cards, thoughtful care packages, visit, registry items, emails, calls, offers of help, etc.

It’s overwhelming proof that I’m not a loner and that there are a lot of people out there that care about what happens to me. I’ve pretty much been smacked in the face with this fact and I think I needed it. I think my life will be better from it.

Of course there have been some people that I thought I’d hear from and didn’t, but I’m letting that go because people don’t always know how to deal with this and also cancer doesn’t cure things, like issues in friendships or distance that’s grown.

Also how can I dwell when I have a tidal wave of caring and well wishes from more people than I ever would have thought would care? Its humbling and a feeling that I’m being lifted up by a crowd of people, like I’m not as along as I feel sometimes in Vermont, but am supported by a village of people that I’ve gotten to know throughout different periods of my life.

I know that me having cancer can make you feel powerless, you can’t cure me and it can seem like you can’t make it better. You do make it better though. Every note, email, letter, card, call, and visit make it better. You are doing something and it’s really important. I have doctors to fix me (like a lot of them). I love the things I get sent or given that I can’t even imagine needing and then realized I did. Some friends in SF sent me a pirate nightlight that projects stars on the ceiling for about an hour and then automatically shuts off. Sometimes I have trouble at night, it’s easy in the dark to drown in worries and thoughts. Now I have the stars to keep me from drowning in the darkness, but I never would have thought to ask for them. There’s the small teddybear which is the perfect size not to be to large when I’m so fragile in a lot of places making it hard to hold things, but is soft and substantial enough to make me feel better holding on when things hurt. There’s the wonder woman cup and the cup of courage that both remind me to be strong, but were never something I would have thought of. There are so many other things too (like my unicorn bouquet, coloring books, books, CDs, wine glasses, etc) that come from my creative, thoughtful, sweet, and strong friends and family.

photo (1)

Thank you.

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…