Sir Portsman III

Chemo day, #1! After writing my sad sack post this morning, I showered up, and got ready to kick some ass.

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I would like to introduce you all to someone. His name is Sir Portsman III, and he was a total ass today. He wears a monocle and top hat because he’s pretentious like that. And yes, I drew him with my finger while in the waiting room. Is that weird?

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He had been instructed to lie quietly in wait under my skin, and gently receive the needle that I would get my afternoon poison cocktail through. After all, I had pampered him with a luxurious body wrap of lidocaine an hour earlier. Well, he didn’t get the message. My port site is still insanely sore, and all the lidocaine did was start to dissolve the steristrips, yet somehow not actually numbing any skin at all. So those had to be pulled off and then the force of the push of the needle into the port left me in tears. That sucker burned like fire for a good 20 minutes. Not cool, Sir P. Get it together for next time, will you?

The actual infusion process was a piece of cake. I chewed Italian ice like a good girl during the first part to attempt to prevent mouth sores. It went by pretty fast. Here’s a glimpse of the surroundings.

Few bags of fluids, steroids, antinausea meds, the Cytoxin,  2 syringes of “the red devil”, several pee breaks, and an animal cracker snack (chemo bear was hungry, too), and we were done.

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See ya in….24 hours for my Neulasta shot, Columbus Oncology. You were very kind today. Now I’m lying down, feeling queasy already which may absolutely be in my head, and trying to drink an ocean. Good luck to me!

I am a rock, I am an iiiiiiisland

At the risk of sounding like an emo 15 year old girl, I’m putting this out there today. Pretty sure I deserve at least a day of feeling sorry for myself, and the morning of chemo sounds like a pretty good day to do it.

The title comes from one of my very favorite Simon and Garfunkel songs. If you want to go listen, I will wait.

Good, right? Most of you know I am fairly significantly introverted. Unlike the song, I DO love many people, and wouldn’t say that “it’s laughter and it’s loving I disdain”. However, when times are crappy (as I’m pretty sure now qualifies as), my most natural inclination is to retreat into myself. I don’t want to be like this. It’s part of why I put this blog out there. It’s a way to force myself to let people in, without having to actually put in the face time to do it over and over again, because lord knows I don’t have the energy for that these days.

One of the big taglines for breast cancer is “nobody fights alone”. I get the sentiment behind that, and I could not feel more support from everyone in my life right now. I hate the whole thinking of “cancer can be a gift”. I get where people come from with that, too. There have been things that have happened since this diagnosis that have made me feel love from so, so many people. Even complete strangers. And that part is a gift. However….if I’m being honest, it’s a gift I would return in order to NOT have cancer. As far as not fighting alone, I have a million people (slight exaggeration) I can call on to help me/us when needed, to love me, to be there for us. But in the end, cancer feels very lonely. Nobody can do it for me. They aren’t getting medicine that is poisoning their entire body, or having body parts removed, or getting radiation that is frying their skin. They aren’t imagining their family carrying on without them in it. I know this is dramatic to say, given my semi-early staging (which I am so, SO grateful for). But I have also learned enough about this, unfortunately, to know that I’m given no guarantees. There is never going to be a day where I am told, “It’s gone, and with 100% certainty, never coming back”. There are many, many women who have beaten cancer and lived to be very old women, dying from something that has nothing to do with this beast. But there are also women, women just like me, who have been told they have won….and then find out 6 months, or 3 years, or 10 years down the road….I’m so sorry, cells have escaped, and you are now incurable. I have so many steps ahead of me to even get to a point where I’m past active treatment, that I cannot allow myself to focus on that too much yet. It’s definitely something I never understood about cancer survivors prior to getting it myself…..that it isn’t really ever over. Not saying that these women, these survivors, are not able to be happy. They are, and I will be, too. I do know that. It’s just one of those experiences that forever colors your life going forward, and at this moment, I don’t know how to deal with that.

I know that I should feel lucky to have such wonderful support in my life. I couldn’t ask for a better husband and partner to go through all of this with me. And I know, that in so many real ways, my pain IS his pain, and I truly hate that. I hate that my happy go lucky 5 year old son has to even know what cancer is at his age. I hate that I will have to miss out on days or even hours of his life by being sick or recovering in bed. When that happens, and I hear him playing with Sean without me, it feels like I’m glimpsing a future that might be. So instead, what I do, is withdraw. It’s hard for me to reach out, to call people back, to set up times to get together and talk about this boogeyman. It makes zero sense to feel devastated at the thought of missing out on time with the people I love, but instead squander the time I have right this second, but it’s hard to put it all aside in my mind and play with my son like he deserves. Or talk to my husband and tell him the things in my head. Or call my best friend and let her be there for me to talk me down. But it’s hard right now. Everything is so hard right now. All I can manage is an endless search for answers that I can’t be given. No amount of information about this disease, or the treatment, or the outcomes will tell me what IS going to happen to ME. It can’t. I need to walk away from that, and trust in….well, if I said trust in God, that would be a lie right now. I have never felt further away from God than I do now. I wish that wasn’t that case. It would be of an extreme comfort if I could do that. But trust in….something…..that I will be ok. That my family will be ok. That life will go on. I promise, I’m working on that.

‘Twas the night before chemo….

….and all through the the house, Sean is helping to clean, Q is obliviously playing, and I am packing a bag of things that will distract/help tomorrow. I have a feeling once I get there, and let’s be honest, starting right now, the only thing I will be able to think is, “eeeeeeeeeeeeeeeeek”.

We had a nice weekend, trying to enjoy the last time I will feel “normal” in quite a while. Though that’s not really true either, since I haven’t had that gift since November, and didn’t know that day was it  until it was over. Took Q yesterday to see the Lego Batman movie (which was QUITE entertaining), and met a few great friends for dinner at Cap City. Today, we had a lovely early Valentines Day celebration at one of our favorite places.

In case you are wondering what my POWER PORT looks like at this point, I will show you below, so…. avert your eyes if you don’t want to see. I noticed today that now that the swelling has gone down, I can see a portion of the tubing and it is freaking me the freak out. I knew I would be able to see the triangular port, and had accepted that…..but didn’t know I’d have to also deal with what looks like a worm under there. <shudder> It makes me think of the scene in Poltergeist where the tequila worm grows in his stomach and….emerges.

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When I WILL be thankful for it is tomorrow, when I don’t have to get poked in the arm a bunch. Yay for small favors.

In other news, we ended up having the cancer talk with Q, after he asked us if he was going to die of cancer because he had a headache. Clearly he has been paying attention. We were very positive with him, explained in very simple terms what cancer is, and went over all the survivors we know personally. We emphasized that I will be just fine after I get the “special medicine” called chemotherapy. I wish I was as confident about that as I stated to him. After our cancer talk, he said he had a question. We braced ourselves, and he said, “What’s addiction? I heard it on tv, that it’s a disease. I think it’s when you drink too much alcohol, like 10 cups of wine”. Then he said that he’s glad he knows now, because if he sees us drinking, he can say, “Guys! That is NOT good for you.” Good watching out, kid.

We gave Q a teddy bear the hospital gave us to pass on to him. He decided he would name it “chemo” because that’s “a cute name”. I hope it feels super adorable running through my veins tomorrow.

Tomorrow also marks roughly 2 weeks until I say goodbye to hair….interested to see how this process is gonna go down. We bought clippers the other day, so we are ready! I have no interest in looking like a baby bird while I hang on to every last hair as long as possible, so as soon as it starts to go….I have a date with those clippers. I’ll miss this hair.

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I’ll keep ya’all posted about how tomorrow goes. Stay tuned.

 

One port & a side of cookie dough, please

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I am home, and now have a….wait for it….”power port” implanted in my body. This must be what it feels like to be a spy with a cool tracking device or something….except spies probs don’t cry as much as I did today. Getting this makes the impending chemo that much more real.

Everything went well, except remember when I said the expanders seem to be really high? Well, they are. Because the doctors realized today that the place they usually put the chest port was blocked by the expander. Oops. After some back and forth, they were able to put it a little higher and closer to my shoulder. I was offered the option to have a picc line instead, but that sucker hangs outside your body, needs a weekly office visit to be flushed, and prevents swimming, baths, etc. Since this will be my bff for at least the next 5 months or so, I said no thank you to the line.

We stopped off for some lunch on the way home and then hit up this new place in town….

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It’s soft serve….with a bunch of toppings….and tubs of cookie dough made to safely eat raw. I know. Great idea whilst eating….less great AFTER eating. But yum. Also you get to eat at arcade tables. We played some Frogger while we ate our cups of awesomeness.

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Steps to becoming a bionic woman…

I thought when I got this whole cancer thing, that stuff would be removed from my body, but it just seems to keep getting added. Step 1 was getting these tissue expanders, which now that I have gotten filled once, appear to be migrating towards my chin. Soon I’ll be able to rest my head on them at night to sleep, much like an old fat cat of ours did on her neck rolls. Step 2 is getting my port in T minus 22 hours. For those of you who may not be familiar with this (most of you, thank god), here’s what that is:

Through a port (sometimes called by brand names such as Port-a-cath or Mediport) inserted in your chest during a short outpatient surgery. A port is a small disc made of plastic or metal about the size of a quarter that sits just under the skin. A soft thin tube called a catheter connects the port to a large vein. Your chemotherapy medicines are given through a special needle that fits right into the port. You also can have blood drawn through the port. When all your cycles of chemotherapy are done, the port is removed during another short outpatient procedure.” http://www.breastcancer.org/treatment/chemotherapy/process/how

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*breasts pictured above are not my own

Getting this is a double edged sword. It means that I won’t have to endure endless needle sticks via IV for all the blood draws and chemo infusions over the next 4-5 months. Instead, I am told I will be given a prescription for a numbing cream to put on the port site prior to access so that it will be as painless as possible. What it also means is that I will have another scar to add to the map of sadness that is becoming my body, and a visible lump that looks to me like something laid an egg about to hatch disgusting insects through my skin at any moment. How pronounced it is seems to vary, so I won’t lift a picture from someone else’s personal blog to show you, but if you are interested you can google image search “chemo port” and get lots of examples assaulting your eyes. If you are keeping track, the scar tally includes 2 incisions across my chest and into my underarm area, will include tattoos of tiny blue dots to mark where the radiation will happen (these cannot be my first tattoos. I can’t let that happen. TBD how I will rectify that.), and now an incision on my upper chest for the port.

I have just in the last few days started feeling physically not in pain for most of the day, even with being more active, so it stands to reason that tomorrow brings another surgery. I think that’s what’s ahead of me for the next section of time with chemo. I will feel better just in time to feel worse again. But I will keep repeating to myself, “cancer can suck it, I am stronger than this” until this is over.

I am breaking up with you, cancer. Get the hell out.

 

Faker.

Going out in public today with this hair made me feel like a fraud. I got some compliments from people, and immediately felt like saying, “Please don’t think I’m actually as cool as this current hair choice may indicate.”. However, I really like having it. Way more than I thought. It feels freeing to do something that’s completely unlike me. I talked previously about my tendency to bring up my current circumstances when people talk to me, like some kind of nervous tic. Today, upon entering a store, the sales clerk said she loved my hair and I told her I just had it done yesterday. She asked if I had ever done it before, and I said, nope, first time. I was about to walk away and she went on… “What made you decide to do it?”, and out it came. “Well, I’m going through chemo in a few weeks and it is all going to fall out so I wanted something fun”. She was silent for a beat and then said, “….I want to give you a hug.”. I also inserted myself into a conversation yesterday with the woman getting her hair done next to me. I’m fairly socially awkward, as many of you already know. Or at least I feel that way, but can sometimes pass as a normal person in society. So I try to AVOID conversations in public, but for some reason, as I heard her tell the stylist she was going to be starting a pill form of chemo soon, I felt the need to say, “Oh really?? I’m starting chemo, too! That’s why I’m here, might as well do something fun, right?” She looked uncomfortable and said, “Oh no, I’m so sorry. I’m actually going to be taking a form of it for lupus, not cancer…..now I want to cry!”. I found myself back-pedaling and saying, “No! No, please don’t. I’m going to be fine! They caught it early!”, as if I had any obligation to make this person feel better about my circumstances, but then again, I did throw them out there unnecessarily into a conversation that was happening completely without me.

At least when I’m bald, people will likely just assume I have cancer and not say anything to me. Or maybe I’ll feel the need to tell them I didn’t choose to shave my head. OR maybe I’ll surprise myself and find having no hair freeing, as well. Time will tell. In the meantime, I’ll try not to make an ass of myself. No promises, though.

Oh yes I did.

 

The sole perk of losing your hair to chemo is that you have a window of time during which you can do absolutely anything you want to your hair with zero long term consequence. Wanna go blonde? Try out a pixie? Look like a My Little Pony doll? Here’s your chance.

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Before

It takes a lot of steps to go from the above, to….

…new, fun-hair-for-3-weeks!

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P.S. Orangey bleached blonde is not a good look for me. Now I know.

Tough talks and snuggles

We talked to Quentin today. Sean explained that I would need medicine to make sure all the “bad things” were gone after my surgery, and that the medicine causes some weird side effects. He talked about me potentially feeling sick to my stomach, tired, etc, and that the WEIRDEST side effect was that I would lose all my hair. Quentin busted out in laughter, but only until he realized we were being serious about that one. He is very worried that I will “look creepy” without hair. I told him I wasn’t happy about it either, but that I probably wouldn’t be walking around bald a whole lot (at least at first). We’ll let him get used to creepy mommy with the hats and then he can get used to creepy mommy without hats. We talked about scarves, and hats, and the wig. We told him tomorrow I’ll be going to get a pretty short haircut, and would come home with hair dyed in some fun colors. To be fair, he was just as upset about the idea of a drastic haircut as he was the bald factor. I would like to remind you of this video, taken when he was maybe 2, and I got a haircut that was nowhere near as drastic, but shorter than usual. It’s worth copying into your browser, I’ll wait.

https://video-ord1-1.xx.fbcdn.net/v/t42.1790-2/11771645_10153392231965239_1634142036_n.mp4?efg=eyJybHIiOjMwMCwicmxhIjo1MTIsInZlbmNvZGVfdGFnIjoic2QifQ%3D%3D&rl=300&vabr=96&oh=89eaf07a957b1820259d94d345393657&oe=5896B023

This is what I’m working with, friends.

Luckily, I know kids are resilient, and that he will get used to the new me no matter what I look like. But damn, it was hard to see him cry about it and say he’s worried I’ll look scary, and that he’ll “just have to snuggle with daddy instead”. From the time I first thought about chemo, my number one fear about it was that Quentin would be scared of me during it. Hopefully my fears will be unfounded after the initial shock wears off. Hell, I don’t think I’ll be spending a lot of time looking at myself in the mirror bald. ‘Cause yikes. That’s creepy.

We have a good kid. He was sweet about the fact that I wouldn’t feel well, and asked some really good questions (though, “do you have cancer?” was not one of them, which really surprised me). If he comes around to that at some point, we will be honest. He wanted to know if he would have the same thing happen to him when he grows up. He also wanted to know what to tell his friends if they see me with no hair. At the end of it all we spent time snuggling together, and he told us thank you for telling him what was going to happen. He REALLY likes to know what to expect, and the unknown is very unsettling to him. Like mother, like son.

 

We want to pump…you up!

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Quick post…had my first “fill” at the plastic surgeon’s office today. It went ok, better than I anticipated. Let’s hope the rest of this mess follows suit, shall we? In addition, I found out the implant surgery cannot happen until 6 MONTHS after radiation has ended. For those of you keeping track at home, that means I will not be finished with this until next March. 2018. This is soooo sad for me. Not because I really want the implants, but because the expanders are THAT uncomfortable. Sigh. Part of the process, right?

That Girl Is Poisooooooooon…

Today we met with the man who will be taking care of business for the next several months, my medical oncologist, Dr Blair. While he told us what I expected to hear, that I would receive the (not as fun as a margarita) cocktail of ACT, I did not expect to hear the overall time-frame would be so long. The drugs involved in that, for those lucky to not already know from personal experience, are Adriamycin, Cytoxin, and Taxol. I’ll be getting AC every other week for 4 infusions, and then T weekly for 12 (count em, TWELVE) weeks. I hear that the AC is the tougher part for most people. As my onco put it, if AC is like being hit with a sledgehammer every other week, the T is (for many people) like a lighter tap weekly. On Wednesday, I will have a port placed near my clavicle to allow for the infusions and blood draws and the heroin to help me deal with all this without blowing out my veins. It’s an outpatient surgery, so just a local anesthetic and sedation. The following Monday will be my first infusion, and then I’ll return on Tuesday for a shot of a drug called Neulasta, which will boost my white blood count so I will be able to recover enough to do it all over again in 2 weeks. All of these things come with a laundry list of side effects that may or may not happen. Many of them can be pretty well managed with some medication, but some you just have to get through. I know the basics of what to most likely expect, but I’m trying not to pay an overly huge amount of attention to all of them, because it may not be an issue for me. Everyone handles this regimen differently. The one near 100% guarantee is that I will say goodbye to my hair, which I’ve been inching towards accepting, but I’m not gonna lie, it will be a gut punch.

My original plan had been to return to work on 2/21/17 after taking 6 weeks to recover from the surgery, and then just see how chemo went and whether I’d be able to work through it or not. However, I had assumed I would be on an every 3 week schedule. Going every 2 weeks, and on this regimen, there’s a good chance I won’t feel good enough for the majority of those 2 weeks to go to work. Unfortunately, I don’t have a job where I can show up when I feel good, and take off when I don’t. Well, I could in theory utilizing good ol FMLA, but that would involve taking a lot of unpaid time off if I did it that way. What IS fortunate, is that I have a job that allows for me to receive short term disability benefits, that pay out at almost 70% of my full salary. Soooo it makes more financial sense for me to extend the disability benefits rather than have to take a bunch of unpaid days, even though it seems silly to sit around at home on the days that I DO feel ok and otherwise up to working. Since my doctor seems confident that the toughest part will be this first AC section, that will span 2 months, I’ll extend my benefits for that time, and then attempt to return to work for the T. Even though that will be more frequent, side effects should be less, and another lucky part of my job is that the hours are flexible, so I can play around with my schedule to accommodate the infusions and still get in my 40 hours. I should also be able to work just fine through the radiation. After the chemo, that will be seem like a breeze. In truth, it feels like a relief to think about being off while going through this most intensive part, and just being able to focus on healing and making it through. If I end up surprising everyone and taking it like a champ with few side effects, I can always return to work at any time.

The other thing that happened yesterday was that I went wig shopping at the boutique located in the hospital. What. I also have realized that I hate the word “wig”. The sound of it, the associated feelings, all of it. I need to come up with something else. “Alternative hair” or “flowy headband” perhaps. My intention was to combat my feelings by trying on some wigs that are not at all me and taking pictures and trying to have some fun with it. While I did try on wigs that were not me, it ended up not being the fun fashion show I envisioned, and instead just felt depressing and awkward, so no pictures were taken to commemorate. My original thought was, this ain’t no secret. I don’t need to pick a wig that looks most like my real hair, because I’m not trying to pretend it isn’t happening. Why not try something completely unlike me? But when I tried on the completely unlike me….alternative hair thingies……it just felt phony and stupid and made me want to run out of the building. So I went with something that is darker brown, shoulder length, a few layers…..essentially it looks like my hair but thicker and better and what my hair would look like if I had a normal human amount of it and took the time to blow it out every day. I still don’t see myself actually wearing it much, but it feels like a security blanket to have, and to be able to wear if I want to go somewhere where I don’t know people and don’t want the sad cancer patient glances. It feels super weird to think about wearing it at home, or at work, or around friends…..and I can’t put my finger on why that would be. Like I’m trying to pretend the hair loss isn’t happening….it just seems fake and sad, but I’m not sure WHY I feel that way, because I certainly don’t think that about anyone ELSE who would choose to wear one. And if I’m wearing a scarf or a hat, it’s basically doing the same thing, covering up a big ol bald head. Maybe I’ll surprise myself and like it, who knows. Or, maybe I’ll just go all “bald out” and wear nothing at all and feel fine about it.

The other thing the experience brought up for me is anger at insurance companies. I had been told that this would be covered under my policy when I made the appt for the fitting. I even gave the woman I talked to all of my specific information for my policy and she called and double checked, and yes, with a prescription from a doctor, it’s covered. When we arrived, though, the person we met with took copies of my information again and said that while in general Aetna covers wigs for cancer patients, MY policy does not, and that when she had submitted claims for my employer (the state of Ohio) before, they have all been rejected. This is pretty upsetting to me, because while I was able to purchase what I wanted anyways…..not everybody has that option. Cancer takes so much away from you, and you should at least be able to obtain something that helps you look as normal as possible if you want it. If federal law dictates insurance HAS to cover breast reconstruction after cancer, it seems like hair loss should also be addressed. I can’t even think about what’s to come with the ACA repeal and what that will mean for so many people going through life-saving treatment. To summarize, insurance is awesome if you are lucky enough to have it, and terrible if you don’t, and I have a million and one feelings about where our country is as far as taking care of its citizens, and where we are headed. But that’s for another time.

Now that we know all the pieces to this puzzle, at least all the pieces it’s possible to know, we are going to have a conversation with Quentin tomorrow about it. Since he’s only 5, we have shielded him from most of this thus far. He obviously knows I had surgery on my breasts, and we told him that it was because the doctors found something inside that could make me very sick if they didn’t take it out. We had left out the C-word, feeling like it wasn’t something he needed to know about at that point, and because there was a chance that surgery was all I’d need, that maybe he would never need any further information than that. He’s a sensitive kid, and a worrier, and we wanted to make his 5 year old life as easy as possible. Now that we know this will be a long year of ongoing treatment, he needs to know more. I really hate that. He is spending the night with his grandparents tonight, so we decided to talk to him tomorrow when he gets home. Sean and I talked a lot last night about how to approach it, and decided that we likely still won’t volunteer the C-word. We’ll talk about the chemo, and how it is being used to make sure that I am healthy, and will cause me to feel sick sometimes, and will cause me to lose my hair. He has a very basic awareness of cancer, mostly from tv ads with bald children he has seen for St Jude, and the local James cancer hospital. He has never actually known anyone who has gone through this, so he has very little context for it. However, I think when we talk about the hair loss, there’s a good chance he will ask directly if it’s cancer, and if he does, we will be honest about it. Fun times, right? Just another thing that makes me angry….he shouldn’t have to go through this. None of us should, but him especially.

On a lighter note, I also was fitted yesterday for mastectomy bras and these silicone inserts that I can use until my implant surgery to make clothes fit in a more normal fashion. I never really thought about women’s clothes being cut to accommodate breasts, but of course they are, so everything looks funky on me right now. While the wig fitting was sad, the bra fitting was giggle inducing, as I tried on all of this stuff with a woman adjusting my fake boobs. Much like the childbirth process, at the beginning of this it felt awkward to open up my shirt and have someone starting at my breasts, poking at them and discussing them. Now, I feel like I could encounter someone in the grocery store and show them my scars and feel just fine about it. What, these old things? Everyone else has seen them, you might as well, too. Don’t worry, I’m not going to insert a picture of them into this post. You’re welcome.