Hello! I apologize for the hiatus but I had a tough week so my really great husband stepped in and wrote a blog post that was incredibly vulnerable and insightful. I am very proud and consider myself very lucky to have someone, particularly him (the 12th was our 1 month anniversary so if all goes as planned, it will always be him). Nick will be popping in from time to time to give a different perspective on things which I think is pretty refreshing. If you have any topic ideas or questions please free to comment, shoot me a message on Facebook, or e-mail me so that I can get them to him!
I would really like to spend this post doing some updating mixed in with a little education. I realized my first post ended with me getting my first chemo. It seems so long ago considering that yesterday I finished my last round of that particular type of chemo. I would like to break this down and continue that timeline to let you know what my treatment plan looks like, how it has effected my body, and what the future looks like. This is probably going to be a long post because I have had several women contact me that are either going through or are about to go through treatment and have asked how I’m tolerating everything. I plan on doing a future post about what to keep on hand at home and during chemo infusions but there’s not going to be room today. Unfortunately I have no funny song titles to mix in either BUT I wrote a haiku to Netflix that if someone doesn’t stop me, I’ll probably e-mail to them when I’m on narcotics over the next few days. Here we go…
So I attended my first chemo treatment on June 1st. They pulled the PICC out of my arm the same day (didn’t feel a thing). I was not particularly happy about this because we had no idea how I would feel by the wedding (11 days later). Having spent an entire year planning something like this I was angry and worried that I would not be able to enjoy the day. The first surgical oncologist told me “you may be able to walk down the aisle”. Not comforting. LUCKILY I felt great! Aside from almost passing out during some photos (I literally ran inside, took off my dress, and stood in front of a fan) the evening was absolutely perfect. It was a June wedding in Texas so it isn’t to say chemo was only to blame, it just seemed to bother me most when I had to stand in one place for a long time.
Nick and I had to postpone our 8 day honeymoon but were able to stay for two nights at a small resort in Austin. We tried to soak up this time because we really weren’t sure what the next few months would look like. Most chemotherapy is cumulative, basically it means you feel suckier every time as it builds in your system. We made our little getaway short because I had to be up very early on Wednesday…
- June 15. 5 AM PEOPLE. I’m not saying we got up at 5 am, we had to be filling out paperwork at 5 am in the hospital. I am NOT a morning person. Luckily my BFF and Matron of Honor (Courtney) stayed for a few days after the wedding. She is a 1st grade teacher so she is totally used to hearing bitching and moaning in the morning. I imagine that trying to control 20 small children is like herding cats, but I may be making that up. I’m not making up the fact that just trying to get me out the door before 5 AM is exactly like herding cats [EDIT- Court has informed me that getting me up was actually harder than dealing with 20 1st graders at 8am]. All of that to say- we made it to the hospital. I was put under general anesthesia and came out with a big bruise and a new implant in my body. It’s difficult for me to explain how a port works but essentially it means it’s much easier than getting an IV anytime I need blood drawn or I need emergency fluids. I felt some soreness when moving my arm for a few days but it wasn’t bad at all.
If I know my port is going to be “accessed” at an appointment, I rub a prescription lidocain ointment on it and it numbs it (most of the time). I have found that slathering it on thick and covering it in plastic wrap until my appointment really helps. My surgical oncologist did an excellent job and my scar is very minimal. The first photo is the day of and the second photo is from today (Friday the 15th).
After my port surgery we all booked it over to Texas Oncology for my second chemo session at 11am.
I have been trying to come up with a way to not make this post so choppy but at this time I feel like I need to explain my treatment regime and what it entails. FYI: before I start explaining the poison let me say that all breast cancer is different. I’m not talking about the actual diagnosis ( though there are many different types of breast cancer) but the individuals fighting cancer. I have gotten a lot of “Wait, why are you doing this first?”, “My doctor didn’t even offer that as an option!”, “What do you recommend?”. First, I recommend you don’t ever get cancer. Second, I am not a doctor and I do not feel comfortable giving any type of medical advice. I will let you know why I was given the treatment, how it made me feel, and how I dealt with it, but at the end of the day I always encourage others to speak with their medical oncologist, surgical oncologist, or plastic surgeon. I’ll now break down chemo in general, l the side effects of these drugs, and then my surgery plan.
- CHEMO (I sometimes imagine myself picketing around my doctor’s office chanting “HELL NO MO CHEMO!” But that would eventually kill me so I won’t.)- Normal cells divide in what you would consider a normal and organized way. My cells went 50 shades of cray and began rapidly forming cancer in my breast (my tumor). It was decided that because I am young, am triple negative, and that my cancer is extremely aggressive, we would use cytoxic drugs (chemotherapy) to treat it. Both my medical oncologist and my surgical oncologist recommended neo-adjuvant treatment which means getting chemo prior to surgery.
- PRE-CHEMO DRUGS- I began having some anxiety on the day of chemo (I have begun to associate the smell of a doctors office with bad news, nausea, needles, etc) so my doctor gave me Ativan to keep my nausea and anxiety under control. When I arrive for my chemo I have a quick check with my doctor and then have labs drawn. Before they begin pumping you with chemo you receive a cocktail of other meds to help with a variety of issues. If you look at the photo below (ignore the two highlighted drugs, we will get there in a minute) the 3-5 meds listed are for nausea and the following 3 are labeled as “hypersensitivity reaction”. This includes some Benadryl and a steroid. All of these take about an hour and a half to be pumped in my port.
- MY CHEMO-
- AC and T which means Doxorubicin + Cycophosphamide and Taxol.
- Doxorubicin (A) is what many call the “red devil” or “red death”. Yeah, they’re really cute names and it really annoys me when any oncology professionals refers to them this way in front of patients. Doxorubicin is bright red and it sucks. It comes in these two large syringes that remind me of cherry jello shot syringes (I hate cherry) and unlike many chemotherapy drugs where it is administered through a bag, a specially trained nurse has to put on gloves and lay down a sterile sheet while she hand pushes it through my port. I am confident there are reasons why, I just don’t feel like Googling it. Probably something to do with it being so toxic. I keep ice chips in my mouth for the duration of this because the coldness restricts the blood vessels in my mouth and helps prevent mouth sores. For the next day my pee is red, my tears are pink, and my sweat is pink. My taste immediately changes and I feel something come over my body. I just feel toxic. Despite this, I know it is necessary because, to put it simply, Doxorubicin blocks DNA production in cells.
- Cycophosphamide (C) comes in a small bag they hook to my IV pole and is usually given to me before the Doxorubicin. The point is to block the the cancer cells from replicating (you the MVP Cycophosphamide!). Unlike Doxorubicin, I really don’t feel anything after this is administered.
- Usually people are given AC every 20-21 days but my doctor decided to give it to me “dose dense” which means every 2 weeks. I had 4 rounds of this combo and finished my last one yesterday, the 14th.
- Paclitaxel (Taxol) I will begin in a few weeks. I will be getting this weekly for 12 weeks. From what I have heard, it is considered “chemo light” which, after enduring AC, I am SO excited about. The only additional side effect this brings to the table is possible neuropathy (numbness or tingling) in my fingers and toes. I have been told to soak my hands and feet in ice water to combat this (same reason I keep ice in my mouth during Doxorubicin).
- AC and T which means Doxorubicin + Cycophosphamide and Taxol.
- SIDE EFFECTS-
- Nausea and vomiting
- Hair loss
- Increased risk of infection
- Sores in mouth
- Eye irritation
- Bladder irritation
- Loss of fertility
- Chemo brain
- I have not experienced sores, eye irritation, bladder irritation, or chemo brain. Jury is still out on loss of fertility. Considering, I am really not doing that bad. If you look at the things I am dealing with, modern medicine has been amazing at helping me deal with them. For example, for nausea and vomiting I wear a nausea patch and am prescribed Zofran, Promethazine, and Ativan. For hair loss I tried cold caps (more on that in another blog post). For the increased risk of infections I try to keep my white blood cells elevated by receiving a shot called Neulasta (more on that in a minute). I also take folic acid, vitamin D, and iron to try and help replace what has been lost. As for fatigue…. well, I just sleep a lot.
- I need a special section for Neulasta. I HATE Neulasta. I have to go back into the office 24 hours after my chemo infusion to get this really painful shot. It’s a thick and cold solution that is injected extremely slowly into the back of your arm. In theory, Neulasta makes your bone marrow go into overdrive and keeps your white blood cells from plummeting. It also comes with a cool side effect: bone pain. If I had to describe bone pain it would be- imagine a steam roller coming at you feet first. It’s slow. It’s dull. It’s excruciating. On days it’s not that bad I compare it to hitting your funny bone (the sharp tingling sensation that no one has ever referred to as funny) except it pops up in my hips, my jaw, and my fingers. This has been the worst part of chemo by far. Because of Neulasta I have to take narcotics that knock me out and make me really loopy. I apologize for any conversations we have had via text 1-3 days post chemo because I probably do not remember them.
- SURGERY- Because I am triple negative, there is around an 80-90% chance that I will get cancer again within the next 5 years. Triple negative breast cancer has the worst survival and recurrence rates. Funny enough, if I can just make it to year 5, I have been told that the script flips and it becomes the most survivable with the lowest recurrence rate. I have decided that, as a preventative measure, I would like to have a double mastectomy. I met with my plastic surgeon on Wednesday and I will also be having reconstruction. What I will have is called a deep inferior epigastric perforators (DIEP) flap. They will take tissue from my stomach and build me new boobs. I am hoping this will be able to happen the third week of November (new boobs for my birthday? It’s the 15th). The only hold up would be if they find cancerous lymph nodes around my breasts. This mean I would need radiation. I don’t even want to go there right now because I’m trying to be positive and am hoping that this won’t be a thing.
There you have it! I know it was long but I really hope it was easy to follow. As always, you’re more than welcome to ask me anything, correct me, and/or give me more info.
I’ll end this post with a bit of an update. The reason I was not able to post last week was because my 3rd chemo really knocked me on my
ass butt (I think people from work read this so by crossing that out I feel that it says “I’m letting you know that I’m putting effort into being respectful but also this is my blog so I’m going to do what I want”. I have my chemo appointments on Wednesdays (this last one was a Thursday because my doctor was out) so I usually feel back to semi- normal on Monday. But last Monday I could not get out of bed. I was still nauseous, sore, and did not feel like myself. I felt like I had been riding the struggle bus, had fallen off, and then it had backed over me. When I went to my check up the following Wednesday it was found that my Neulasta hadn’t kicked in (I had barely any white blood cells) and I had a low grade fever. I spent the rest of the week laying low in the house and began feeling better on Saturday. Before Saturday I realized that laying low sucks.
Sure, being a couch potato is all fun and games until something happens that no one is expecting. It’s a tactic used to shame those of us that binge watch Netflix who also simultaneously play Candy Crush, take naps, or play with their dog.
It’s the back hand of Netflix and while laying in bed I wrote this Haiku as a response:
Excuse me Netflix,
Yes, Yes I am still watching
That was really rude.
This latest chemo wasn’t too bad yesterday. I wanted to write this morning before I go get my Neulasta shot at 1:30 because I’ll be out after that. Here’s a photo Nick took and posted on my Facebook (without my knowledge) yesterday with the caption: “Ma’am, please don’t make us enact a one cupcake per person policy”
So what, I crave sweets during chemo. Jokes on Nick because a bunch of people have offered to bring me cupcakes and this may be the best thing to come out of having cancer.
Next time I’ll give you a list of things I’ve cried about in the last 2 weeks (spoiler alert: they’re somewhat ridiculous), how much it sucks that I can’t have grapefruit (spoiler alert again: one of the reasons I cried), and how much community this blog has created. So many women from so many countries that I have been able to lean on and, in turn, help comfort. Thank you all for reading and sharing. I can’t explain how nice it is for a friend of a friend of a friend to connect with me over cancer because someone shared the post. Y’all are the best!