And switched to Wordpress. I love you Tumblr, but I needed some functions that I just couldn’t get for free here anymore.
Check out jennadays.wordpress.com for future updates and old posts (moved everything over).
xoxo Tumblr community.
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.
I had my first surgery yesterday as part of my IVF. Friday night I had a little big picture freak out session, but yesterday actually went really well. I was only out for about a half hour, they got way more than they thought they would, and I woke up and wasn’t freaked out (my previous experiences with anesthesia left me pretty freaked out when I awoke). The most recent time was getting my wisdom teeth out and I woke up during the surgery, not excellent.
So I woke up and they told me how over achievingly successful my ovaries are (Ivy Leaguers…) and I started to cry from relief. It actually felt really good to cry about something that was good news instead of all the sad/scared/overwhelmed crying I’ve been doing. It’s also apparently really normal to cry after coming out of anesthesia, but whatever. So I sat there and cried about how great it was that this worked out really well and that we’ll have popsicle babies on layaway and how fortunate we are to have been able to do this. Also, guess who doesn’t have to give herself shots in the stomach anymore? yeah boy!
Today we got the call that they were hoping that they’d have 60% success rate out of what they extracted and they ended up with 90% which is pretty much unheard of and amazing. So if anyone needs some baby help I probably have some I could sell you, assuming that you don’t mind that their mom had cancer at 30. It’s a huge relief that makes me a little sad though because based on the rate of success I can’t help but think that we’d have been able to have kids pretty easily. It’s not as hard to think about as when I first got diagnosed, but it’s still a sore spot for me. Cancer < Babies
Tomorrow I go in for surgery number two in the early afternoon. They’re taking some nodes (insert Pitch Perfect reference here) and doing something to my abdomen to prep for the tram flap. It’s the start of my spiral of being down and out for a while unfortunately. Still sucks that I’m so uncomfortable right now that I’m not getting some time to appreciate my healthy/paint free body. My Mom is coming with us, because otherwise who knows what she’d do to our room this time while stressing out back at the house.
On a completely unrelated/funny note, Myles, aka the Poop aka Bathmat, fell out of our second story window (he’s fine). He is so fat that he popped the screen out by leaning against it (although to be fair it wasn’t in the greatest shape due to the former occupant of my room). My Mom thought he was dead when she found the screen and was freaking out about having to tell me, but then Myles came walking out from the backyard and was totally fine. This is his second incident with falling out of a window, so the plus side is that I win the argument with A. about whether or not he is stupid enough to fall out of a window. It’s the little things.
And Rena and Vivian are here all week which is also excellent.
So I found out that the PET scan that I did yesterday was clear so other than tiny microscopic cancers that haven’t developed into anything, I am clear of cancer anywhere other than my left boob. Very good news. Based on this blog, you all can imagine my jubilation. I found out at 8am this morning after not a great night sleep, so I forgot to tell A. who was not pleased with me. Oops.
Today I found out that my Monday surgery is more in-depth than I was originally told which sucks a lot. For the last couple of weeks I’ve been undergoing IVF treatment because there’s a decent enough chance that Chemo will kill my baby chances. Super fun having cancer at 30, have I mentioned that yet? It’s not a sure thing and there are lots of people that have babies after chemo, but like I said, it’s not a sure thing.
So before I get my boob chopped off and have chemo, I’ve been giving myself shots in the stomach 2-3 times a day. I know you’re all super jelly of me right now. I shot up in a fancy hotel in Boston this weekend and a parking lot yesterday, so I’m feeling pretty edgy these days. I’m totally ready to party with Kate Moss as soon as she calls me. Most of the time women do this they get to be excited about the fact that they’ll be trying to have a kid right away; try being excited about putting your kids on layaway for 2 years while giving yourself a shot in the stomach. I can hardly contain my excitement.
So the result of this is my body being all messed up on hormones (I started almost crying in the revolutionary war cemetery in Boston this weekend), being bloated, and now my ovaries kind of hurt/are uncomfortable while walking. This also equals a ton of doctors visits and ultrasounds that are cruel and unusual punishments. They literally don’t have enough time in a week to do all the things they want to do to me between this and the cancer, it’s insane. This week I was at the doctor’s Monday, Wednesday, Thursday and will be there Friday and Saturday with my surgery on Monday. Cancer is the best non-paying full time job ever. Saturday is when they take the eggs out and I can stop the shots, so really looking forward to that one. It’s also unfortunately another knock me out surgery, so I have to go under three times in a little over a week. I was trying to think of a witty blackout joke here, but just am not up to it right now. so [insert joke about blacking out in college here].
The shitty news I found out today is that they’re taking some lymph nodes to test on Monday. This is standard procedure, not because anything else is wrong, and allows them to be prepared to take more during my big surgery or none at all of these are clear. This totally sucks because instead of just the abdominal minor surgery I now will also have a 2-3 inch incision with things removed around my boob. Given that I’m still sore from my tiny incision from my biopsy over a week ago, I’ll be uncomfortable every day up until my big surgery. Doesn’t that put things in perspective for you that with all the shitty news, this is THE shitty news for me right now? Somehow I’ve accepted everything else going on, but any changes just throw me off.
It just really sucks that going into something that’s going to be really physically and mentally traumatic, I’m not going to get any time with my body to be comfortable and appreciate it since I got diagnosed, so I’m having a cry day today.
inevitable: adjective: 1.
I had the urge to call this “countdown to mutilation” but I thought that might be a bit too melodramatic? Things are getting a bit darker for me as I get closer to my surgery date. Thursday last week was my day off from the hospital and I spent most of the day in a funk, not the greatest use of a day off (although I did have a biopsy the day before so I was limited in what I could do physically).
Good news is that the lymph node biopsy is negative so that means they won’t remove all my lymph nodes around my boob, which means one less complication concern and hopefully no radiation. My Mom had some pretty unfortunate reactions that have stayed with her permanently from radiation, so if I can get out of it, I will.
Everyone was happy/excited when I found this out. How did I feel? I felt like I still have cancer. That’s great that it’s not even shittier, but not something I can feel a positive emotion about. I would definitely feel worse if that or any of the scans came back with bad news, but I just can muster up an positivity that a shitty situation isn’t worse. I am however, cool and supportive for anyone else that feels good about it, because someone should.
One of my classmates in 6th grade nicknamed me “little miss negative” (and by nicknamed, he was the only person who called me that). We worked on a toothpick bridge project together. Anyways, I was thinking about it today because I feel this darkness covering more of my head lately. I dread going to the hospital, which I did on Friday and am spending the day at tomorrow.
I am terrified of my surgery on the 25th. Not because I think I’m going to die or anything is going to go wrong, I just know it’s going to hurt and it’s going to take a long time for me to heal, and I’m going to be really restricted in what I can do, and I’ll never be the same after physically. See what I mean about darkness? Probably going to go murder some puppies after this for good measure.
It’s really hard though to be moving a day closer every day to something I desperately don’t want to happen, but can’t do anything about. Once I do the surgery then I’m healing so I can do chemo and chemo scares me because I may get some pretty gnarly permanent side effects and I’m also not stoked about my odds of baldness (although not permanent). It’s just a lot of stuff that I have to get through that’s going to take months and I think every day leading up to the 25th is going to get tougher for me.
Ok here’s some info about what’s happening so that I can get off the emotional stuff for a bit.
I’m doing a single mastectomy. The right one hasn’t tried to kill me yet, so if it ain’t broke… Based on the tumor size, boob size, and the fact there look to be some “cancer satellites” in the left, a lumpectomy isn’t really an option. My cancer is also really aggressive and has a high rate of recurrence, so this is the safer route. It also helps me hopefully avoid radiation which would be pretty tight since I have to do chemo.
Doing it with the surgery for a lot of reasons, chiefly because it’ll mean I don’t have to do another big surgery after going through this and I think it will help me mentally recover better. I’m doing what’s called a “tram flap”. Don’t worry, I’d never heard of it either. By the way, how weird is it that you are now going to know this much about my boob? So a tram flap is when they take abdominal tissue and reconstruct with that. To be flip, you get a tummy tuck and a boob job. I picked it because in the video I watched about options, the woman who had a saline implant said it “slooshed” one night when she turned over. No fucking way. Silicon implants need work every 10-15 years, have higher risk of complications/infections, and you have to get a chest MRI every few years to check for cancer because a regular mammo won’t get through. I had the pleasure of a chest MRI and they suck pretty majorly. Also I’m just doing one boob. The perks of a tram flap is that they connect the blood vessels, so it’s your body and not a foreign object, won’t need to get replaced, will age with your body, and has lower risk of complications and infections. It does however have a longer recovery time because of the abdominal surgery. (For those of you that have done your homework, I do know what a DIEP is and have decided against with my surgeon). My focus on all of this is my long game because I’m 30, so that’s why I went with it.
The hard thing with all of my decisions in this is that there isn’t a right one or wrong one. I have to decide based on my limited knowledge and recommendations of my team. Even advice from people who have gone through this, there’s like 15 different types of breast cancer, there’s age, stage, tumor size, etc that all adds up to make it hard to directly compare experiences with. Seriously, if you want to feel like a special unique snowflake, get breast cancer. Or don’t.
So I’m in the hospital all day tomorrow for stuff. I can’t eat after 9am so I’m going for a giant breakfast. My scan isn’t until 4pm so it’s going to be a long day. I may be hangry.
Friday I’m at the hospital again so they can make sure my heart is in good condition for chemo (imagine just how excited I’ll be when they tell me it is) and meet with my oncologist.
Monday the 18th I go in for a same day surgery that’s a prep for the tram flap on the 25th. They’re doing something to the blood vessels in my abdomen.
I have a good friend coming to stay tomorrow night, and another good friend coming up from NY for a few days at the end of the week and weekend. I also just had a really wonderful time in Boston with A. So don’t cry for me Argentina, I’m not alone. I just feel that way at times because I’m the only one getting their boob chopped off in this play.
When you have cancer, it’s all relative as usual, so you get excited about some fucked up things. Like yesterday I was excited that we were able to switch the needles that I am injecting myself with on a daily basis out for smaller needles. Like actually excited, Like going for ice cream excited. Just weird.
Today we are excited that my bone scan came back clear. yay! We are excited that there isn’t cancer in my bones. It’s a fucked up world I’m living in folks. The CT scan is mostly clear, there is one lymph node that looks odd and they’re going to do another scan to check it out. This won’t interfere with my treatment plan of surgery first and chemo second though so that is good enough for me. Break out the bubbly, oh wait, I can’t drink right now.
Yesterday when I was having a rough day and thinking that it was going to be a really crappy ride home the following happened in this order:
1. One of my best friends emailed to tell me she’s engaged. I think her fiance is wonderful, so perked me right up.
2. A. told a joke and made me laugh, can’t even remember what it was now, but I was impressed that he could make me laugh right then.
3. My parent’s neighbors had us come over and they have TEN Cavalier King Charles Spaniels (click on the link to see what these look like). It was wonderful puppy madness.
4. Those same neighbors booked a hotel for me and A. to go away to this weekend in Boston. Just amazing.
So just like Chumbawamba says (friends recently sent me this CD in a care package), I get knocked down, but I get up again. You’re never gonna keep me down.
Here’s what I wore today along with my new pirate sock monkey waiting for me at home.
Belated photo of my pirate punching bag and second mate Matt the cat.
It’s tough depending on people that you don’t know to fix you, pretty powerless inducing so I’m doing some things on my own. Not sure if they help, but they don’t hurt and that’s really all that matters.
This weekend I made my first green drank courtesy of my friend/former boss Kammie.
I’m normally a Kashi breakfast girl, but decided to kick it up to some more vitamins. So yes Danny, I’m now drinking Kale. It’s also nice because it takes the pressure/guilt off if I don’t manage to eat super healthy for my other meal(s). Eating Kashi is like eating cardboard, so this is a step up for taste.
I had my first acupuncture appointment today. I wish I had a photo, but I didn’t want to weird my doctor out too much on our first visit, so next time. I like this guy a lot: when he started he said super enthusiastically “ok I’m going to stick needles in your ear now!” Obviously crazy, but the kind of crazy I enjoy. The ear thing did hurt a little, but overall it felt good and I either found the acupuncture or the lying on a table listening to soothing music really relaxing. Either way I’ll take it.
My last alternative therapy I’m currently doing is all of you. I’ve had some super well timed care packages recently when I’ve been feeling really down. It helps me not feel so isolated, because it is isolating being here after being surrounded by people for years. They do make me cry, but in the best possible way. I also owe a photo shoot that I will do this week because I’ve received some awesome stuff in the mail since my last one and quite a few things came without names.
(it’s amazing how awesome the people I’ve worked with are. blows me away).
Ok so here’s status:
1. Positive thoughts/prayers/sage burning that my CT and bone scan are clear tomorrow.
2. Weds I go for the lymph node biopsy, it would be great if that was clear too, but I’m saving myself the grief and just not investing must positivity there. I keep striking out in that office.
3. Surgery is scheduled (and will stay scheduled assuming step 1 goes ok): 8/18 and 8/25, 8/18 is when they have to do some prep. I believe it will be same day. 8/25 I will be in the hospital 3-5 days.
On to the next one…
I was at DHMC from 8am-6pm today and in meetings back to back the entire time. On one hand, there is an entire team working hard to fix me, on the other hand, it’s exhausting.
Some of what’s going on I’ll share now and some I may share later or not at all. The one thing I ask is please don’t send me anything you’ve googled (other than Pirates) and please don’t send me stories of other people right now (I may be interested later, but am not ready to really reach out to the rest of the cancer community). I am extremely overwhelmed right now, but doing a good job of holding it together (I didn’t cry at all today at the doctor’s so I went out for ice cream afterwards). However, I do love all of your support.
Ok, so here’s where I’m at roughly. My goal is to not do chemo first, my original goal was not to do it at all, but if wishes were horses, beggars would ride. The doctors want me to do chemo first, but that would be 6-8 months and then surgery which would make it next to impossible for me to start a life in New Orleans anytime in the near future and make me feel stuck in cancer land for a very long time. Surgery first means that I can transfer my chemo treatments down to New Orleans once I and the medical powers that be feel comfortable and then can start working towards a job, etc.
The doctors are cool with what I want on one condition, I’m having a bone scan and a CT on Tuesday and they need to come back clean, as in no cancer anywhere other than my left boob. If there is cancer other places, well holy shit that will suck, but I’ll need chemo first to try and get that under control because it will be a completely different story. So hopefully this will be the good thing that the cosmos owe me right now.
I am also getting a lymph node biopsy on Tuesday which is going to suck big hairy balls. I am seriously displeased about this. It’s going to hurt and bruise worse than the boob one and I will once again not be able to hang out in my parent’s pond or to tubing, which has been going on for a while now and will be a permanent thing through the end of summer once I go for surgery. Cut me a break here. I don’t have a lot going on for me right now.
Two of my nodes were enlarged in my MRI and I had a ultrasound today to look at them. Good news was that one of them looked fine, but the second one is still enlarged which could indicate cancer presence, which is how cancer also spreads to other places. Hella lame. However, I’ve also had a cough for five weeks, so it could be a bi-product of being sick and not have any cancer presence. So nothing concrete, but if it does have cancer then they’ll remove a ton of those (possibly all) instead of just some when I have surgery and I won’t sweat under that arm (not so bad right?). Bad side (always is one with this) is that I would need radiation and it would increase my chances of lymphodema which is pretty shitty. However, if you’re going to send positive thoughts or talk to the big man/woman, please focus on the bone scan and CT, that’s my priority to have turn out ok.
On a positive note, I really liked all of my doctors (except for one ultrasound nurse that I’ll probably never have to see again; she was reminiscing about the good old days when they just took everything out rather than doing all this imaging to be able to pinpoint what was actually needed. Seriously.) I met with a bajillion people today, so this is hats off to DHMC for hiring great people. Everyone was really focused on doing whatever they can for us, we were actually supposed to be done around 1pm, but they fit in a ton more meetings on doctor’s schedules so we accomplished a lot today.
It was also a completely surreal day. We had to decide some things that people take years to decide in 30min, because of my situation. It’s insane. It’s also really crazy just how many decisions and discussions we had today. I feel like I spent the day in some sort of twisted never never land, no connection to the real world. Luckily we’re going back tomorrow for a few hours, so that should be a good reminder that this is in fact real.
Like I said, emotionally I did way better than I thought I would, but I am exhausted now. Thank you all for your support, it really helps. Also, I had high hopes of visiting SF and getting an emotional recharge from everyone there, but that’s 99% not happening at this point due to the timing of everything I need done. I told A. that cancer is shitting all over my life today. I still feel that way pretty firmly, but I did have ice cream that was really good at the end of it, so there’s that. Also, no one appears to think I’m dying, so that’s comforting as well.
If anyone thinks I should not have shared this story, talk to my Aunty Babs, because she encouraged me.
I have a funny story about how this whole “I have breast cancer” thing started. Crazy right? Well I’m in a shitty mood today about things, so I’m going to write my funny story.
First, the back story:
A. and I have been together about 9.5 years, we started dating in college which was about 45min from my parent’s house, so we spent a fair amount of time there when we first started dating. My family already knew him because we’d been really close friends for the 3 years before and he’d been over many times.
Fast forward to 2 years ago, we’d been together for over 7 years, were married, and living in SF. I come back home for a few days the end of June by myself and my Mom flies back to SF with me. Somehow she tells me that she and my Dad were arguing that day about whether or not A. grabbed my boob in front of my Dad when we first started dating. This was the first I’d heard of this and was pretty much like “what the hell?” So my Mom proceeds to tell me that according to my Dad, A. grabbed my boob while we were sitting in the living room talking to my Dad. First off, My Dad is a very tall man and intimidating. Second, A. is a respectful guy. There is no way this happened.
So we get to SF and I tell my Aunty Babs and she tells me that the rest of the family has known about this for years, but she agrees it couldn’t have happened. It’s a very strange experience finding out that your family has been arguing about whether or not your now husband grabbed your boob in front of your Dad for around 7 years. Hilarious and strange. Obviously I never bring this up to my Dad because the last thing I want to do is discuss my boob and their proximity to A.
I had always assumed my Dad’s initial grumpiness about A. for the first few years was because he’s my over-protective father (he discussed buying land for my and my Brother to live on together in VT when I was in college, he thought I followed A. out to SF rather than came for my own interests, etc. A tad over protective of his daughter. The first two guys I dated came over to my house for the first times and he was cleaning his guns. True story.)
Another side note, my Dad loves A. now, one of his all time favorite people.
Fast forward to my diagnosis, which was a pretty shitty day for all of us. Dad is sitting in the dining room and A. is across from him both eating. I walk in and sit down rather smugly and say “This is going to be awkward for A., but I have one thing to say to you Dad.” I have both of their attention now.
"Remember that boob grab that you think happened, but totally didn’t happen?"
"How did you hear about that?" and some additional shocked comments from Dad.
"Whatever. Anyways, I just want you to know that A. grabbing my boob probably saved my life, because he found the lump."
My Dad sat there for a few seconds and then looked at A. across the table, grinned, and said “Nice grab” and high-fived him.
My father, ladies and gentleman.