Surgical tales, volume II

It has been a few days since my surgery, and I’m happy to report that I made it through. Thanks to those who have written to me. I’ve been a bit slow on responding but I appreciate your concern and warm wishes. Thanks to Katie S. for that sweet hospital gown, and Tiffany for the nice tea, and Maytal for the lasagnas and banana bread (which made the hubs very happy as well), and the Rock-it Promo team for all the fun products and DVDs, and everyone else who has sent cards and nice things. Thank you!

The surgery went well, from what I can tell. I didn’t get to actually speak to my surgeon after I woke up, but I assume if something had gone terribly wrong, I would have been informed. I don’t remember too much, because the anesthetic tends to do strange things to your memory, which is probably for the best. I do recall crying like a baby when a nurse started my IV through my wrist. I’m not sure why she chose my wrist, but she poked me several times and the pain was way more severe than I expected. I was in the middle of talking to a surgical fellow, when I realized I was in pain. So I did what any normal adult woman would do, and I pulled the blanket over my head and sobbed. Lately I have realized that my hospital crying sessions are about a 50/50 mix of emotional and physical pain. The instant my brain receives the signal that I am again in pain, however small or fleeting it may be, I am overcome with the realization of how much my body has been attacked and how much I have gone through since finding that lump, and the sheer absurdity of the entire thing. The tears come more from exhaustion than from anything else. I am tired of the pain, I am tired of feeling like some sort of botched science experiment. The tears are just inevitable at this point, and I let them flow freely, as they wish.

I also remember the mask being lowered onto my face, which I do not enjoy, as I am highly claustrophobic. Upon realizing this, the kind anesthesiologist did his drug magic and gave me something to knock me out before the real knock out. I made a comment about how ugly the ceiling was and how there should be something more pleasant to stare at while you wait to lose consciousness, and then that’s the last I remember. Lights out.

I was not in the hospital very long this time around. I wanted to go home that evening, and I believe I said to the nurse, “Get me the eff out of this place.” So she got the approval for me to be discharged and I didn’t have to sleep in the hospital and hear the chemo machines beep all night. A sound which now triggers a queasy feeling inside whenever I hear it.

I’ve been doing well at home. As people had told me, the recovery for this surgery is definitely much easier than the first, which I’m very happy about. I was only on the heavy drugs for a couple days, and now the pain is tolerable with no drugs, as long as I don’t move around too much. I have my stupid surgical drains, which I hope to get removed by my home care nurse in the next couple days. If you have no idea what drains are, consider yourself lucky. Don’t google it. It’s about as gross as it sounds.

The weather finally seems to be getting a bit nicer outside. I went for a walk today. And by a walk, I mean a few steps out my door and then back. But I got to feel the sun for a bit, which was nice. It’s days like these that it’s best for me to stay away from social media, where everyone is making grand proclamations about their love of springtime and all the fun things they’re doing today. It’s hard to relate to everyone else when you have tubes hanging out of your body. Right now, I am most looking forward to getting clearance to take a bath. You don’t realize how wonderful something like taking a simple shower or bath is, until that privilege is taken away from you. The little things.

I don’t have a current photo to post because I am not feeling particularly photo-friendly at the moment. But posts that are all text are a bit boring, so I’ll leave you with this old photo of me. At some department store, in Paris, laughing over something that probably wasn’t all that funny. I hope to be doing this again sometime in the future.

 

Surgical tales

As I mentioned in my vlog, I will be having surgery this coming Wednesday. Why am I having surgery? Well, to answer that question, we need to go back in time a bit. Let’s take a walk down memory lane, shall we?

On October 19th, I had a bilateral mastectomy. In non-cancer terms, this means that both of my breasts were removed. Which was about as much fun as it sounds. I realize I never wrote about my surgery, since it happened prior to starting this blog. But it was quite a large piece of the fighting cancer puzzle, as this was when my ugly effing tumor was removed.

The decision to have the mastectomy was ultimately mine to make. Many women opt for a “lumpectomy”, where the tumor is surgically removed but the surrounding breast and tissue remain. Every situation is very different, and often complicated. The period of time spent making this decision was not an easy time in my life. I had just been given this bombshell of a diagnosis, was secretly running back and forth between work and hospital appointments, and had to wrap my head around the idea of losing my breasts, a month after I had celebrated my 28th birthday. To say I was overwhelmed would be an understatement. Looking back, I’m not even sure how I slept, or how I got dressed, or how I got up each day, without completely losing my shit. Every time I would go to the restroom while at work, I would touch my chest and feel the tumor. Yep, still there. It was real. And I wanted it out, as soon as possible.

After some thoughtful deliberation and research, and a bit of soul-searching, I decided I wanted to remove the entire breast on the tumor side. And if I was giving up one, I would send the other one packing as well. Although it was upsetting, I didn’t feel any great attachment to my breasts at that point. They were trying to kill me, after all. And I don’t respond too kindly to anything that threatens my life. So, bye bye boobies it was.

I’m not going to get overly detailed about the intricacies of the actual surgery or the weeks that followed. Waking up from that surgery was not easy. Breasts gone. Giant scars in their place. Surgical drains protruding from my skin. Lots of pain. I spent several days in the hospital, completely loopy and nauseous from the constant flow of pain meds through my veins. I can remember how angry I was that first week. When I was lucid enough to feel any emotion, it was anger. Accepting that I had been diagnosed with cancer was still new to me. And now I had no breasts and couldn’t get to the bathroom without help and couldn’t raise my arms. Nothing about any of it felt alright.

When a young resident came to check on me and we mentioned that the drugs they were giving me did not seem to be helping enough with the pain, she remarked in a condescending tone that it was not normal to be in as much pain as I was in. You might guess that I did not respond well to this type of comment, and you would be correct. I did not appreciate this doctor making me feel guilty for the pain I was feeling. Let me cut your boobs off and see how you like it, I might have said if I’d had any strength to even open my mouth at that point. I wanted to tear her blonde ponytail right off. It has been six months, and I still feel anger towards this woman, this stranger. For making me feel inadequate and weak a day after I had lost part of my body. She was a doctor. And a woman. A bit of compassion would have gone a very long way. Luckily, however, there were many other people who helped me get through it all, such as my husband, who slept on the hospital floor next to me for three nights. Not exactly the getaway we had hoped for as we approached our first wedding anniversary, but at least we were together. Nothing says romance like having your wife high on morphine and hearing screams coming from the rooms down the hall all night.

The weeks after were difficult, with many challenges (oh the irony of not being able to shave or wash my hair while I still actually had hair) but things got much easier as the days went by, and I healed well. Eventually I was raising my arms and getting back my strength and feeling almost normal again. Just in time to start chemo. And we all know how much fun that was!

This week, I go under the knife again for my reconstruction surgery. In other words, I’m getting some new boobs. For the past six months, I have had “expanders”, that were placed under my chest muscles at the same time my breast tissue was removed. Over the months, they were slowly “expanded”, like a balloon, with saline from a giant syringe needle. This was to stretch the skin to make room for the permanent implant. Although I have adjusted to having these weird turtle shells sitting on my chest, they are uncomfortable and tight and push on my ribs, and I won’t be sad to see them go. The implants should be more natural and more comfortable, which would be a welcome relief. (And if you’re wondering if I viewed this as my opportunity to have huge boobs, the answer is… No. Sorry to disappoint.)

I’m not sure how I feel about this upcoming surgery. I don’t really feel scared. I have been through so much. I don’t like the idea of being put to sleep again, and being cut again, and waking up in pain again. I would prefer not to be having surgery again and to get to enjoy the week and just have a break from it all, for a bit. That is what I’d like right now. But these days, I am not calling the shots. So I’ll  get dressed in yet another hideous hospital gown, do what they tell me to do, and let them “reconstruct” me and put me back together. As much as they can, that is. No new breasts will ever be able to replace the ones I lost. All that I’ve lost. But it’s a start.

Today.
Today.

 

Hold on for one more day

This past Friday, I was once again a patron of the chemo ward. As you may or may not recall from previous posts, although I am technically done the chemotherapy part of my treatment, I still need to receive infusions every three weeks for one year. This is because I have an aggressive form of breast cancer, and there is an antibody that was created specifically to target this type of cancer. It has been referred to as “the most important advance in breast cancer therapy in 30 years.” Although it’s a bummer to have over a year of infusions, it’s a small price to pay to help increase the odds that I will be alive and kicking a few years from now. I am very grateful to be receiving this therapy, and to be part of a clinical trial involving another targeted drug. In conclusion, science is awesome.

My treatment this round went fairly smoothly. The only time I started to cry was when I was watching another young woman cry who was having trouble getting her IV started. I hate watching other people in pain. And despite the amazing nurses and staff at the hospital, the chemo ward can still be a fairly unsettling place to spend your time. Sometimes I see people who look as though they are about two steps from death’s door. I often feel like I don’t belong. Did someone make a mistake? Do I really have cancer? It still hits me like a punch in the gut sometimes. I don’t know if I will ever get used to being part of this world. I don’t think I want to get used to it.

I have been having some pretty severe muscle pains and stomach issues. But compared to how I usually feel right now during my chemo cycles, my energy is definitely about a million times better, as is my state of mind, so I’m very hopeful that the next year will not be as rough as the past several months have been. I am really praying that the worst is behind me.

Last week, my blog and I were featured on the website She Does The City. I am always very flattered every time someone contacts me asking if they can publish one of my posts or have me write something for them. When I first started this blog, I had no idea that it would spread the way it has or that it would actually create any type of impact. I have had many people write to me, telling me that I have helped them feel less alone while they are dealing with a cancer diagnosis, and these types of messages help give some sort of meaning to this absurd journey I have been on. Considering how isolated I have been, I have made so many connections with all sorts of people. Writing and having people urging me to write has truly been one of the only upshots of this experience. Something providing me with a purpose. So I suppose I should thank the internet, and modern day communication. And thank everyone who reads and reaches out to me and tells me I am doing something helpful during a very scary and very challenging time in my life.

Today I declared that I felt strong enough for some “cancer dancing” and danced around to  various cheesy songs until I felt that my limbs were about to fall off. I was bouncing around for about fifteen minutes, which is fifteen minutes longer than I could stand a few weeks ago. And I didn’t fall down, despite the pain in my legs. An insignificant event for most. A major accomplishment for little ol’ me.


That’s my sister with me in the video. What’s the point in embarrassing yourself if you can’t take someone else down with you? Also, the scarf on my head was forgotten by a friend at my house one night, accidentally. Moral of the story: if you leave something in my home, it will most likely end up on my head.

Brandi

On Friday, I went to the ophthalmologist to try to get some answers concerning the many unfortunate things happening in and all around my poor eyes. It was confirmed that I have “severely” dry eyes, and something called blepharitis, which is the reason for my styes, itchiness, redness, grossness, and general discomfort. I was given many various things to put in my eyes to try to help and a new bedtime eye care ritual that is somewhat unpleasant. The doctor said it could take several months/half a year for the styes to clear up. When I asked, But how long until the constant watering of my eyes goes away, he replied, That will be for the rest of your life.

Chemotherapy, the gift that just keeps giving.

I am doing what I can do to get the situation under control and praying that the entire mess is not going to be chronic and as ridiculously dire as he made it sound. That is completely unacceptable to me, since I currently can’t do much of anything because of my stinking eyes. So we’ll see what happens. (Get it? We’ll “see” what happens? Never pass up an opportunity to make a pun, even if you have cancer and have learned your eyes might be damaged forever.)

Anyway. I’m going to now change to the subject of wigs. When I first learned I would be losing my hair, I wanted to make sure I had a wig that I could use to cover up my bald head. The second after I shave my head, I am putting on a wig and never taking it off, I said. Before starting chemo, I went to a few professional wig shops in the city and tried on some very expensive options (many good wigs can cost well over $1000). It wasn’t as fun as I had wanted it to be. The whole thing felt very strange. All the salespeople seemed to talk to me in this hushed voice. They looked at me with sad eyes, like I might die at any moment. The whole ordeal made me uncomfortable, as did spending so much money on something I didn’t even like all that much. I left each store without purchasing anything, thinking maybe I’d go back eventually. I never did.

After I lost my hair, I was surprised how comfortable I felt going out with just a hat or a scarf. I mean, I have cancer. I’m writing about it. It’s not a secret. I no longer felt the need to hide under fake hair. I was bald throughout most of my chemo, and felt okay about it, which surprised me. I still am amazed I posted photos of myself so freely on the internet, for all to see. If you had asked me if I would do that four months ago, I would have told you you were crazy. But I guess the hair loss made me a bit more confident, in some strange way.

Lately, I’ve been feeling like I missed out a bit on the whole wig part of chemo. Because being bald is fine, but sometimes it’s nice to pretend, just for a little bit. To feel and look like someone who isn’t sick. The more that my appearance has deteriorated with the cumulative effects of chemo, the more I understand that. And the more I miss having hair.

And so, I ordered a wig. Now that I am done with chemo. Which is a bit backwards, but I like to do things my own way. I also broke another rule by ordering it on the internet from some random wig site. This is something “wig experts” at the fancy boutiques will say not to do, because you can’t really tell how it will fit your head, or match your face. However, I am pretty good at figuring stuff out and doing research. So I read through some reviews and looked at some photos and finally settled on a style and colour that I thought might work. It was a good price for the quality, and most will be reimbursed via insurance, so I decided if I don’t like it or wear it only once, it doesn’t really matter. It gave me something to do, and something to be excited about, and possibly something to make me feel a tiny bit better during a low point in my cancer adventure. So that was enough for me.

Yesterday, my wig arrived. The wig’s name is “Brandi” and she is pretty sassy. When I put it on, it reminded me of my old hair. I started brushing it and it has been so long since I have brushed my hair, that I nearly cried. But I was having too much fun playing with Brandi to cry. Too much fun looking in the mirror and remembering what I used to look like. What life used to look like. And what it could look like again.

Ladies and gents: introducing, Brandi.

I am wearing sunglasses to protect my eyes. Or maybe my alter-ego Brandi is just so wild that she wears her sunglasses at night.

 

A few small steps

I just went for a walk to get a sub. It took about 20 minutes total and my legs are burning as if I just ran across the country. When I think back about how far I used to walk, I can’t even imagine it now, but hopefully I will be able to build up some strength again eventually since my current physical state is probably close to that of a 90 year-old woman. All in good time. For now, I’m pretty impressed that I made it there and back and am still alive to tell the tale. Gold star for me.

I have been watching a bunch of TV, which is a good sign, because when I am at my worst, I don’t even have enough energy to to watch television. Which shows how much chemo destroys your ability to do even the laziest possible activity. I’m all caught up on The Vampire Diaries after falling behind for a bit and losing track of which ancient vampire was trying to kill which modern-day hybrid werewolf. I am aware that I am definitely older than the target demographic for this show, but lately all I want to watch are teen shows. I’m sure a psychologist would say it’s some sort of regression/coping mechanism, to avoid all of the very grown-up stuff I have to deal with daily. But I don’t think so. I just love shows made for 14 year-old girls. I have also been watching a ton of Felicity on DVD (thanks, Nicole!) since I somehow missed out on watching it as an actual teen. Very riveting stuff.

Felicity's big haircut.. such a dramatic moment in TV history
Felicity’s big haircut.. such a dramatic moment in TV history

I wanted to reply to each of the comments on my last couple of posts because they were all so thoughtful, but I felt anything I could say would not do justice to the kind words you left for me. I couldn’t believe all the love I got after sharing the sad state I was in. Honestly, if you are feeling down about humans and their ability to show compassion for each other, I urge you to go back and read through all the comments people leave here. I am so lucky to have so much support coming at me.

I am starting to feel better again, in terms of my mood and body pains and fatigue. Unfortunately, I just can’t seem to really catch a break, and my eye troubles have not let up. In fact, today, I counted seven little styes on one of my eyelids. I’ve lost count of how many I have had now since last week. I am not sure why it is happening as it does not seem to be a common cancer thing. I also have permanent teary eyes so it is hard for me to see most of the time. I have walked into a few walls. In short, I look like a mess. I am seeing an ophthalmologist on Friday so we’ll see what that brings. If they try to put anything in my eye, you will likely hear my screams wherever you are. After everything I have been through, I still feel squeamish at the idea of anyone or anything getting near my eye.

So with the eye troubles, I believe I have had every part of my body have some sort of issue. But it’s okay guys, it could be worse. I mean, my head could fall off. There’s always that.

My mom gave me this button.
My mom gave me this button.