Chemotherapy

Moving On

As I mentioned before, it’s totally anti-climactic finishing chemo. First you can’t really do anything to celebrate because you feel like crap and second you go from having this routine to having nothing. I thought it would be nice if I had less side effects this go around like the doctor said could happen, but I didn’t waste my hope on it so I’m not let down which was good because hello side effects! It’s been a week since my final chemo and I’m still in the midst of unpleasantness, although I can eat so that’s exciting at least.

Physically I am exhausted and get lightheaded, as well as the regular aches and pains that come with Taxol. The biggest difference is I feel free to move forward.

We moved into our place January 2nd and have been settling in. It’s really wonderful to have our own place after being nomads or guests for the last 10 months. It’s freeing to be able to do whatever we want with the space and know that we get to stay here as long as we want so we can invest in settling in.

It’s a bit strange staring from scratch after spending years accumulating the right things so we had everything we needed in San Francisco. We’re totally missing a kitchen box that I think must have been left in Vermont so we’ll get it in April. It’s the only solution that I can think of as to why we don’t have any chopping knives, coasters, juice thingy, etc. A. has been a craigslist king and we have almost all of the furniture we need which is impressive given that we haven’t been in our place for a week yet. Guest bed is ready to go. I even have pillows for you.

We picked our place in Uptown because it’s a fun neighborhood to live in and it’s got character. Since our kid timeline is pushed back thanks to the poison in my body, we figured we should make the most of it and push off our suburb house life for a while longer. There are a lot of cool parts to our new place as well as some interesting elements, like the iron spiral staircase to go downstairs. It’s just narrow enough that carrying things like a laundry basket upstairs is a pain in the ass. To offset that though we have a huge upstairs private deck which is pretty sweet. I already have plans to put a kiddy pool out there once we get into hot weather. The fact that we don’t share any walls/ceilings/floors other than the living room and guest bedroom is amazing after living in SF for almost 8 years. Don’t even get me started on the space we have…

The neighborhood is a prize too. We managed to find a coffee shop straight out of San Francisco hipsterville where you can get your bagel (which is decent so obviously not from SF) with smear for $3.50 or with lox for $14. I’m dying for someone to order the $14 bagel so I can see if it’s gold leaf. Want a tomato on that $14 bagel? That’s another $1. We also have a market, multiple restaurants, a yoga studio I’m excited about, and the best ice cream parlor in town within two blocks. Further from that we can walk to Magazine or St Charles and access everything there. Mardi Gras is going to be amazing with our access to the parades and the street car to the quarter. Tonight kicks everything off so we’re going to walk a couple of blocks and check this out.

I’ll take photos.

Tomorrow we bring our unnamed puppy home and that will be our big life change. No more sleeping in until 10am. Wish us luck.

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We had to choose from 7 adorable fluff balls

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The newest member of our household, unnamed as of yet.

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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.

Goodbye Chemo

When I started chemo it was really rough, I wasn’t sure how I could possibly handle 16 weeks of it. I felt hopeless and wanted to give up. It got a little easier after that treatment, but  it still definitely had its very difficult moments. I never went as low as I did that first treatment, but it’s been a very tough 16 weeks. It was a unique experience in that not only were the physical side effects difficult, but it’s also really hard mentally dealing with getting better just to get sick again over and over again.
Now I’ve had my last treatment. It was a long day, 10:50am-7pm and I had a reaction to the taxol again even though they loaded me up with even more allergy meds. There was about an hour where I was really worried that they were going to have to stop the treatment and I’d have to come back. Pretty upsetting on the last treatment, especially because I am transitioning to my new Louisiana insurance on Jan 1. Thankfully I made it through and was the last patient there. However that didn’t stop the awesome nurses from making a fuss over me and helping me celebrate the end of my treatment.
During my taxol chemo I’ve been downloading a movie per session to watch because it’s tough to read when pumped full of benadryl and especially with the allergic reactions I’ve been having. I try and pick ones that are easy to watch. For my last treatment I picked the Notebook because I’ve wanted to see it for years and I figured A. wouldn’t be sad to miss it. For years I’ve been hearing about how romantic this movie is and how great it is. I’m female and have a pulse so I love Ryan Gosling and I also love Rachel McAdams. So after years of buildup I watched the Notebook and… thought it was terrible. I think that ends my brief chapter of Nicholas Sparks movies for good.
So what are my next steps? I meet with my oncologist in about three weeks and then I meet with the physician’s assistant that runs the survivor program a couple of weeks after that (you can come with me Mom). These meetings will be to check in on how I’m recovering from chemo and next steps. The plan is that I will come in for an exam every three months for the first couple of years. These don’t involve scans, they’ll probably include a blood test to see how all of my levels are (like they do before chemo) and a physical exam. Chemo side effects differ from person to person. Some people feel some of the side effects for years, here’s hoping that’s not me. It looks like I can expect an inch of hair in two months, dream big right? So those of you that are sorry to see the wigs go, worry not. They’ll be around for a while longer.
My immune system should be healthier in 4-6 weeks, although it will take a few months to get back to full strength. I can have sushi in a month. I guess that will be my celebration dinner. They told me that I can have my champagne as soon as I feel up to it, so hopefully when our friends are in town in a few weeks. I felt awesome getting out of that last chemo appointment, but one lesson I have learned through my weeks of getting poisoned is don’t overdue it. It’s tough not being able to go balls to the wall and celebrate this being over, but I’m going to be patient.
I am so happy to have made it this far and not to have to do chemo anymore, but it’s far from over. I have to get through my side effects, grow some hair, and figure out what being a survivor means. The reoccurrence risk is scary, especially for the first couple of years and I’ll have to figure out how to live with that without it being a dominant part of my life. I also have my reconstruction surgery still pending, I’m getting a third opinion with a plastic surgeon who looks promising and is affiliated with my hospital. I haven’t met him yet, but I’m hoping he’s the one because that would simplify things for me.
I do have some amazing things right now happening to help me make the transition. I think it will be a little like after you have your wedding. You’ve spent months being in cram mode getting everything done and focusing so much time and energy on this one thing that is now over. We’re moving into our new place on Friday and hopefully bringing home a puppy on Saturday. These will give me things to focus on and re-prioritize, especially when one of them is a new life that needs help learning about the world.
Goodbye 2014 and goodbye chemo.

When Taxol Attacks

So at this point taxol may be winning the race against AC in being the worst chemo. It’s hard to say because AC had longer misery, but taxol attacks with more intensity in short bursts. Since I’m currently on taxol, it also skews it in it’s favor of being the worst ever.

After I got through the evening of misery on taxol I then had to endure the days and nights of muscle aches and bone pain, It was hella lame. Drinking tonic water helps a considerable amount, but I find that disgusting and it doesn’t fix it entirely. It took a week and a half for me to get to eat normally and be able to stay somewhere without being in pain or being exhausted or having a fever. That lucky day was Thanksgiving so at least I got to enjoy a delicious dinner and dessert with the family.

The fever thing totally sucks because if I get a fever of 100.4 or greater I have to go to the emergency room which would be tons of fun. I had three nights of fevers in a row and none of them thankfully got above 99.9, but it’s really stressful to have a fever and go to sleep with one with the emergency room hanging over my head. It means that when I wake up in the night I have to check my temperature which means waking up more than I’d like to at 2 or 4am. Luckily each time my fever had broken, but still super lame.

The other thing I have learned about taxol is that it is significantly more exhausting than AC. Just doing a little bit exhausts me to the point I have to go lay down for a few hours. Even if it’s just sitting around hanging out with people. I went for a walk in the park with A. and was pretty out of it from how tired I got and needed a few hours to recover from it. I’m feeling like an old lady between the aches and pains, exhaustion, and hot flashes from the meds/chemo. Couple that with my love of feeding the ducks/geese/swans and I’m in my 60s at 30.

Anyhow, so I had my second dose of taxol Monday which means I have just two more to go which is very nice. The second dose of taxol though was not for the faint of heart. I found out from my doctor that when they tested my levels this time (they test a ton of different things before they sign the ok for chemo each time) that my platelets are low and my liver enzymes are high. Both of these things are not unexpected, but it’s a little nerve wracking because I don’t want anything to mess with my schedule. If something is too off they will postpone your chemo treatment and right now I have the week of Christmas off and complete treatment the week of new years. I really like the idea of leaving all this in 2014 and also being able to eat on Christmas because my in-laws are fantastic cooks so I will be devastated if I have to postpone a dose. Can’t I have anything nice cancer!?

For those of you that didn’t pay a lot of attention in grade school science and are too lazy to google, platelets are what create blood clots. In addition to making sure I don’t get cut because my body isn’t really equipped to fight infections right now since it’s dealing with being poisoned, I’m now doubly on the safety look out since it sounds like scabs aren’t going to be easy to make right now either. No problem since I’m a total klutz.

The liver enzymes I’m too lazy to google about but apparently we’ll be keeping a close eye on that reading for my next visit so this is the one that I think could keep me out of chemo. Hopefully my liver can toughen the hell up. If it could make it through college with me, it should be able to handle a little poison every two weeks. Shouldn’t be any big thing compared to that 151 shot contest I got into at 19.

So the first dose of taxol I took a heavy dose of steroids as a preventative measure in case I had an allergic reaction to the taxol mixing agent. Yes, even the stuff that they mix the poison with attacks you apparently. Lovely. So I was fine with it so this time I didn’t need to take it. Well about 15-20 minutes into getting my dose of taxol I went to the bathroom and when I came out I knew something was wrong (no my pee wasn’t bright red, that’s just AC). However, my face was turning bright read, my head felt funny, and my chest was tightening. After a few minutes of sitting in my chair and feeling progressively worse, I got A’s attention and told him to get a nurse. He looked pretty alarmed (probably because I looked like I had a tomato for a head) and got the nurse quickly. Then it was all hands on deck as they stopped the taxol and started pumping my IV with stuff to combat the allergic reaction. I also got to get hooked back up to the blood pressure cuff and the heart rate monitor. Very reassuring. I’m starting to hate that blood pressure cuff. I had my blood pressure taken 5 times on Monday. It gets aggravating. Then to top it all off I started throwing up which then gave me a headache. I know this may sound ridiculous to all of you, but I felt really bad about it because I was that person making everyone else around me who was getting chemo have a more miserable time. Not my fault, but it sucks getting chemo and I’ve had a few people make it worse for me (hi dementia lady, way too nosey republican lady, smelly soup dude when I felt super nauseas, and loud phone talker lady) and it sucks even when it’s not their fault when someone makes it even worse. So I hate to be that person.

Eventually they got everything under control and my doctor gave permission for them to start it up again at a slower rate. He also came up to check on me which I appreciated. Another thing that makes me feel like I made the right decision getting my care here. I fell asleep after because I’d gotten up early, been pumped full of Benadryl, and then got really sick. I think it was less of a nap and more of a shutdown because of everything happening to me. Whichever it was, I felt better afterwards and continued watching the latest X-Men movie which was nice and long and really not bad. A. and I got to be in the hospital from 8:50-5:30 with all the craziness and delays.

The good news is that I felt ok last night and I’ve felt good all day today. I felt good after the first chemo, so nothing too exciting here, except that because I took a steroid and have been eating safely today I think that I’m going to make it through without getting violently ill which would be nice. I’m expecting to wake up with aches and pains starting tomorrow, but not getting super sick tonight would be a win. I also went to the movies with A. today and saw the new Hunger Games movies with like 5 people in the theater which was awesome. Old people schedule has it’s perks.

Lines In the Sand

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

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Inside I’m smiling, I swear.

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

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

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

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

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

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

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

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

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

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

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

Losing My Hair

I got a very short buzz cut last Tuesday because my hair was starting to fall out in clumps when I showered. I had gotten my long hair cut short to make this easier, but honestly I don’t think there exists a way to make this step easy. I had originally planned to do it when my two aunts were in town so I could do it with a posse and try to not make it so bad. There’s the saying “Life is what happens while you’re busy making other plans” and it couldn’t be truer than when applied to cancer. I was scheduled to get it cut on Friday and the Saturday before it started coming out in clumps which made me cry. I knew emotionally I couldn’t handle almost a week of doing that every day so I called and was able to get an appointment for Tuesday morning.

I skipped washing my hair for the next couple of days so I didn’t need to see it filling the drain each day. Tuesday I washed it since I was getting it cut and it was just as bad and hard so I knew I made the right decision. My Dad and A. came with me and I went again to Stephanie who had cut my hair for me in the beginning of all of this and has done for other women before. I wish it could have given me the empowered feeling that cutting it off to begin with had, but it just doesn’t work that way in this stage of the game.

In this stage of the game it was another thing reminding me that I’m not in charge and taking control away from me. It’s also really hard losing hair. It’ll grow back, but not for a long time and it also won’t be the same when it does per every account I’ve read. I’ve always viewed my hair as a big part of my self expression and spent thousands over the years on cutting it and dying it (I’m not high maintenance, it just adds up after 30 years guys). I’ve spend hours braiding it, straightening it, smoothing it, etc. I’ve had blonde streaks, pink streaks, purple streaks, and now blue streaks. I’ve had it down to the middle of my back and now as short as a faux hawk. My hair matters to me and having to lose it really really sucks.

I cried when we shaved it. I really didn’t want to because I was/am sick of crying, but again, lack of control… A. and my Dad both shaved the initial pieces. I had them do it because it made me feel like I was less alone in this. I instructed my Dad to not go anywhere near my ears because he was fired as my little brother’s barber when he clipped an ear with the scissors. It wasn’t pretty. The clippers had a good safety guard though so no nicks. My scalp was sore and really sensitive so it was unfortunately a little painful getting it buzzed.

So we cut it to a super short buzz cut and it’s been steadily falling out since then. Annoyingly though it doesn’t fall out evenly or in any sort of order. Cut me a freaking break. Like isn’t it bad enough I’m going bald? Do I really need a bald patch on the back of my head? About as much as I need a third boob. So anyways there’s no photos at this point in the game because it’s just too damn bad and I really don’t need a permanent internet record of the brief period when my head looked like a quilting accident. You long distant people will just have to wait for when I’m bald.

The good news is that my head is totally round and pleasantly shaped. Who knew? No weird dents or bumps so I feel like I’m pulling this off to the best of my ability. I also have my great blonde wig for when I feel like looking like I have real hair and a few little caps when I feel like Rhett Butler aka I don’t give a damn.

To add to the weird list of things that I never thought I would do but have done now thanks to the big C: 1. I’m moisturizing my scalp because it’s really dry with the hair falling out. Hoping this gets better once I’m done shedding 2. Based on other ladies recommendations who have gone through this, I’m using a lint roller on my head to pick up all of the hair shedding. Totally weird, but totally works.

Comparisons from people I love and still love, but haven’t helped:

1. Sinead O’Conner: I read a lot of celebrity gossip. She’s really bad looking these days and totally nuts. No thanks.

2. G. I. Jane: Yes I am a white girl with no hair, thanks.

3. My brother: I’m grasping at my femininity right now with all of this, comparisons to any dude are not helpful.

Cutting it off has helped because it’s not nearly as traumatizing to have little hairs come out compared to seeing the shower drain filled with my hair. It’s also easier each day as it becomes less of a shock to see myself in the mirror. I still forget that it’s gone, but it’s less shocking when I see myself. I feel like I have a neon sign on my forehead when I go out with a little cap or nothing on, that says “CANCER PATIENT”. I’m trying to get over this and hopefully I will eventually, but that has only gotten minisculely easier each day. I still stand by my wishes that I don’t want anyone to shave their head. It would make be feel better to see A. get his head shaved because it would make me feel less alone in this, however I would want it to grow back immediately which isn’t possible so no dice on the shave. I don’t think about my baldness most of the time and I would have to think about it every time I saw his and I just don’t need that kind of reminder.

As with most things, someone else has already written about this and done it better than me: I recommend a read

Today I’m sitting in the chair getting my second to last AC chemo. One more and hopefully food and I can continue our lifelong love. Sometimes the third and fourth of these are the worst per my fellow BC club members so wish me luck. I’ve got some homemade chicken noodle soup waiting for me at home and I’m re-reading the Stand to prepare for the post ebola world.

What Does Taylor Swift Have To Do With Me Having Cancer?

Is a perfectly reasonable question to ask and until today I would have looked at you like you were crazy. Today was one of those one step forward, two steps back kind of days. Or a more accurate and less polite way to put it is, today was one of those days that I got bitch slapped by my cancer and reminded that I’m not in charge most of the time.

As I mentioned before, chemo round 2 has been so much better than chemo round 1. It is still really sucky, but I haven’t felt like I was in hell or lost 14lbs in 5 days so it’s a vast improvement. I just want you lucky non-chemo experiencing people to understand when I say “way better” it’s a really low bar so hold the parade. The main difference is that we got my nausea mostly manageable and I’m taking three different things so I can sleep so I no longer feel like I’m an inmate in Guantanamo (we all know Obama wasn’t going to let me out).

The problem with feeling this much better in comparison is that I stopped putting my cancer first and started thinking I was a normal, somewhat limited, human being again. This was incorrect and as my dear cousin Chris would say, “Rookie Mistake”.

It turns out, even when one is feeling more human and like they can make plans and eat, and be active with their visitors, one still needs to pace themselves and act like they are prone to get sick at any moment. This sounds really lame, but if I had been acting like I’m less than one week into my chemo I probably wouldn’t have gotten super sick. I was already cheating because I went in for fluids and anti-nausea meds at DHMC on Friday. I think I probably would have gotten sick anyway because I was probably due one way or another, but getting really sick when you’ve eaten things you apparently shouldn’t be eating (bye yogurt, it’s been fun), didn’t take an anti-nausea drug because you were ready to be off of them (guess what, you weren’t), and you made plans to go out to lunch and for a long drive (hah), is going to be way worse sick than just normal I had chemo a few days ago and am still sick sick. Or at least I assume so since I didn’t get to experience that one.

The worst part was that I had two amazing wonderful friends that were visiting me that I had to leave to go be sick for like and hour and then come down to tell them I couldn’t hang out. Really really lame. However we did get to hangout most of the morning and last night and I am so very happy I got the time. I wish I had a photo of us for this post, but I thought we’d have plenty of time today. Even though I got bitch slapped by cancer today, I still had a really great time with them and it didn’t ruin it, just made me appreciate it more. I unfortunately don’t have that photo I wanted of all three of us, so I’m posting this in the meantime from 12 years ago when our friendship began.

cute mike and me

Please note that Save the Last Dance is playing behind this prom pic

me and ricky

Early selfies in the bathroom

Thanks guys, it’s been a tough few days and you were rays of sunshine and homemade empanadas.

Ok so back to Taylor Swift. As I mentioned, I was really sick. Like laying on towel (I’m not a heathen) on bathroom floor in misery sick. What gets stuck in my head during this hour+ of misery? “Now I’m laying on the cold hard ground. Ugh! Trouble! Trouble!” Which I then resentfully thought to myself “That bitch doesn’t even know the meaning of trouble. Try cancer.” Sometimes we all need a little bit of a self indulgent moment, and sometimes that moment is hating on Taylor Swift.

Also, fourth musketeer if you’re reading this. It’s been a long time and you were missed.