For those that don’t know, I am a rather big Whitney Houston fan (may she RIP), specifically her tear jerking rendition of the Star Spangled Banner at the 1991 Super Bowl and her involvement in the 1992 hit film The Bodyguard (#1 soundtrack of all time and 3x platinum #humblebrag). I decided to make something that represented my love for Whitney and hate for cancer. Here it is:
It’s been a little while since I have written anything. Usually there will be a day once a week where I feel inspired and it flows out so easily. Lately there has been so much going on (both good and bad) that it’s hard to organize my thoughts sometimes. To hold myself accountable, I’m going to put out here that one of my next blogs is going to be about cancer guilt. I’m sure you have heard about survivors guilt, parents guilt, etc. This is going to focus more on what I have experienced on a personal level. As I come to terms with my illness and my new normal, I have found that a lot of my sadness, anger, anxiety, and sometimes depression, all stem from guilt. I’m going to take a few more days to journal these thoughts before I post them because I want to make sure they make sense to others. I think this is something other people with cancer will be able to relate to. If not, it’s at least been helpful for me to put a name to what I’m feeling. I would also like to post about some books and online resources that have been helpful for me since being diagnosed. From cancer comic books to books about how to care for someone with cancer, I think it will be a great read for those going through treatment as well as those who know someone going through treatment. Not all are completely serious (laughter is absolutely essential) and I’m not a huge fan of all of them so expect honest reviews.
I’m getting to write this on a Monday because unfortunately today I am home sick. I had my first treatment of Taxol last Thursday and was told that although it’s a lighter chemo on your body, these first treatments are going to overlap with AC and could be pretty rough. I felt absolutely fine on Friday but the pain began to creep up on me Sunday. Last night (Sunday night) I was woken up several times by severe pain in my muscles, joints, and ribs. I finally had to take a narcotic (which I try not to do) but nothing else was cutting it. I describe it as someone with a lead pipe just taking swings at my bones. I’ve been told that for some reason taking over the counter Claritin can help with bone pain so I have been adding that to my morning list of meds in hopes it will prevent these issues. So far it’s not preventing anything but it may be dulling the pain- if that is the case I’m afraid to stop taking it because this sucks as it is.
^Hello from bed this glorious Monday morning^
Before I get into the heavier stuff I would like to share some positive things that have come about during the last few weeks!
- I met with my new surgical oncologist (love her) and we have an official plan in stone! I’ll announce the unfortunate surgery dates a little later in the post. The most important thing is she makes me feel comfortable and I really trust her with my body.
That is a very professional high fashion photo shoot shot by my mom. We sent these photos to my best friend because I couldn’t figure out why a boob poncho would ever be a good idea.
- I shaved my head! Well, Nick shaved my head. After I got him first, of course. Guess what? There was no alcohol or crying involved. I know we’re all shocked. There were laughs (the electric razor started fizzling out halfway through Nick’s cut after I had made him look like a a polka dot head and he had a morning meeting so at one point we had to Google when Sports Cuts opened up). There were pockets of silence as Nick cut mine and I saw chunks of hair fall in front of my face. I decided not to keep any of the hair, as this felt odd to me, but maybe in the future I’ll wish that I had. The most startling part was when I stood up out of the bathtub and caught my reflection in the mirror. I let out a little scream and ducked down. I wasn’t prepared to see myself this way. It took a few days before I felt comfortable with my naked head but I am still not ready to post photos or go out in public like this. Nick and I usually rock the bald look at home and sometimes touch our heads together. Goofy little things like this make me tear up because I feel very appreciative to have someone who still makes me feel beautiful when I’m so unsure of myself. On the other hand he also keeps saying that it’s only a matter of time until one of us breaks and calls the other chrome dome.
- I have a weekly squad night (8/2) with 3 girlfriends so I decided to take over my 3 wigs and we would all try them on and drink wine. They were the first group to see me without my hair and they met me with compassion and love. We spent the evening laughing as everyone got to take turns looking like someone else for a bit. This night was very healing and normalizing for me. Taking baby steps like this has been extremely helpful. I’ve come to let myself be okay with the fact that unlike some people who are so brave to rock their bald, I may just need a little more time to be brave.
- Last Wednesday (8/3) I went to a water park with a co-worker and our boys from work. I was able to rock a long wig I threw up in a bun and a headband to really secure it all day. I was originally extremely nervous about how this would limit my time in the sun or ability to go on rides but I did it! I got my hair wet, I wasn’t nervous the entire time, I rode rides with the guys, and I had an absolute blast. I don’t talk about my job a lot on here because I feel that what I do is very personal and confidential and my most important job is keeping my kids safe. What I will do from time to time is brag about my amazing bosses, co-workers, and awesome kids. Today I just want to touch on how proud I was of the guys I have seen grow into polite and caring young men. When the boys saw that I was tired in the middle of the day they offered to carry my tube up the stairs for me. This may not seem like a big thing (I wouldn’t let them do anything big for me, their role is not to worry or care for me and I like to uphold this boundary) but it just made my heart swell with appreciation that I’ve had the opportunity to witness these individuals become really amazing people. I wouldn’t have been able to enjoy that day without having that 2 weeks break from AC. I got a glimpse into post-chemo life and it was so needed to give me a boost before the next treatment cycle.
- The next day I made it to my first Taxol treatment! 1/12 out of the way now. The gave me a ton of benadryl in case I had an allergic reaction so to be honest I don’t remember anything from Thursday except for napping during chemo, going home to nap some more, and then continuing to nap. My mom and good friend went to get pedicures while I was passed out (in my honor, I’m sure) with cute little rhinestone pink ribbons on their toes. Oh, I do remember eating a million pieces of strawberry candy like it was nobodies business. You know those hard candy that look like strawberries in the wrapper and you bite them and they’re chewy? Basically everyone’s great grandma had them in a dish somewhere so I’m sure you’re all familiar.
- The day after chemo I was feeling pretty good. They had given me steroids so I had a ton of energy and wasn’t feeling any side effects. I had the opportunity to speak to an assistant professor and researcher at UT who is doing research on young women with breast cancer. She asked a lot of great questions about identity issues and I really enjoyed speaking with her. I am so appreciative of the work she is doing. If you’re interested in speaking with her I can pass along her info to you. She is located in Austin but I have recently asked if she can do Skype or phone interviews.
- After my interview on Friday I got to do some thing SO exciting!! Back track to July 12th when a fellow triple negative breast cancer fighter messaged me on FB after reading the blog. We instantly clicked as she is incredibly insightful, funny, and encouraging. We continued to talk multiple times a week and eventually found out that we were both in Austin!! She was moving Saturday to head back for graduation so we were able to meet on Friday. It was like hugging someone I had known forever. We spent 3 hours (that flew by) talking about our experiences, laughing about things that have happened, and bringing up some very real concerns. As much as I love and appreciate the support I get daily from friends and family, this girl gets it and it’s refreshing to speak to someone who knows how you feel. She actually recently started a blog of her own that is so great: Tits and Giggles Blog
The last of “the crazy red hair” as Nick calls it, my new saving grace during chemo (not including cupcakes, cupcakes always win), and my mom and friend’s cute cute pedi!
But just in case you missed it, cancer still sucks. Actually having cancer extra sucks but you know what only sort of sucks? Being thankful you only have cancer. It sounds weird but some stuff has happened since my last blog post that opened my eyes and made me grateful for the position I’m in. People say that when they’re diagnosed with cancer it makes them appreciative of every day. Maybe I’m a terrible person but I have spent more time pissed off lately than appreciative. Up until these past couple of weeks I haven’t felt lucky or grateful for my life because I felt like I was getting the short end of the stick for having to fight for it at such a young age. As I begin to accept my diagnosis I am more open to seeing how much worse I could have it. The following examples aren’t meant to be super depressing, and they really aren’t. They’re just to show both you and I how quickly things can change and how we need to be more grateful for our health.
- I attended my weekly post-chemo appointment on Thursday (7/21) for the regular lab work and check up. I mentioned to the doctor that this last chemo had really taken it out of me. I can’t stand and do my makeup anymore, I can barely walk around the grocery store, and I almost pass out when I stand up. I’m not sure what the term for this is but when I walk around for too long, stand for too long, or get up suddenly, my heart races and I can no longer see or hear. Everything is white and I have a high pitched ringing in my ears. This lasts for a few moments until I find a wall or someone to hold onto for a minute. I told the doctor about this and she said it sounded like my hemoglobin was probably low. It had been really low last check up so she warned me that if it had dropped lower that I may have to have a blood transfusion at the hospital. She suggested I have a nurse check my oxygen level as I walk around the clinic to rule out other things as well. I did this and had to stop halfway to take a breather. Not long after that the doctor came in and said that my oxygen had plummeted very suddenly during my walk and that this worried her very much. She said that I may have a clot in my lungs and that I would need an immediate angiogram to rule this out. I was taken by surprise by all of this but none of it had time to really sink in. I left the room to head to the infusion room where they would have to access my port to inject dye in it for the angiogram. As I sat down in one of the infusion chairs while the nurse told me to breathe. It was at that moment that I felt the flood of emotion and fear come over me. Hold on- blood clot? No thank you. I don’t want that. I don’t want this needle or this scan and I don’t want anything else wrong with me. I can’t handle it right now, I’m barely getting over the fact that I have cancer. But that’s not how it works right? So as tears begin falling down my face and I begin hyperventilating I suddenly think- holy shit I am so lucky I only have cancer. Please let me only have cancer. I could have it so much worse and I only have cancer. So I have my breakdown and my port is accessed and I’m taken downstairs for the exam. Luckily I had on a jumpsuit with no metal so I was able to keep my clothes on. The more appointments you go to the more you adapt your clothing. Pro tip: wear easy boob access stuff because your boobs are out a lot. While I’m laying down for my scan this sweet nurse is talking to me about blood thinners and clots and I’m thinking “woman you should have seen me upstairs you don’t want to rock this unstable boat” but she isn’t picking up on it so I just smile and cry and lay there. I lay there until I’m told to get up and wait for my results. As I sit there I try to tell myself that I shouldn’t have complained about how many meds I take daily because now I may have to take even more. But it’s negative! The doctor pops up and says I have no clot! It’s just exhaustion! I’m told I can leave but I don’t know exactly what I’m supposed to do now. My mom and Don head out and I sit in my car and cry because I feel like I dodged a bullet and I wonder how many times this could happen. Now that blood clots are on my radar, of course I’m going to have to web MD the symptoms and give myself anxiety about it. Of course I am. I remained shaken up for the rest of the day and that evening I just wasn’t feeling myself. It was one of those situations where you’re sort of happy crying because nothing is wrong but you’re also crying because it’s scary. Bad news is a scary! I will say that blood clots are not always deadly. I’ve since found out that they happen a lot in people receiving chemotherapy. All that aside, I don’t want one. So I’m moving around more and trying not to lay in bed as much even if I feel like it. This isn’t always comfortable but I now tell myself that at least I’m able to get out of bed and for that I should be thankful.
- Along with moving around more, I am trying to go to work more often. I attempted this a week after the blood clot scare when I finally felt up to going to work. Within 3 hours of being there I was in a bathroom crying on the phone with Texas Oncology (being told “get to the ER, NOW”), my co-worker was on the phone telling Nick to meet us at the hospital, and my boss was rushing me to the ER. I don’t remember much on the way to the hospital but I remember that I was able to stay a little more calm during this incident. You never want to get used to scares but it has been made apparent to me recently that this may come with the territory of cancer and that I have just been fortunate up until this point in my treatment to not have any big issues. As a side note, I would like to encourage anyone going to an emergency room to please advocate for themselves. As I look back I was not given the care I needed at the time and this just became more apparent after speaking to my oncologist. If you have something to say, SAY IT! It is your body and you know it best.
- On Thursday (8/4) a woman walked into the infusion room and up to the nurses station. My infusion chair happened to be next to the nurses that day so I unfortunately heard the woman begin bawling and saying that her cancer had spread to her spine. There were conversations thinly veiled in exhausted hope and my heart ached for this this woman who was feeling helpless. This is why sometimes I don’t like when people refer to getting cancer treatment as “fighting” (even thought I often say this myself). I just feel as though it must be a punch in the gut to those who are terminal. Almost like they didn’t fight hard enough. We’re told to pray and to fight- but what is this is not enough? We don’t need anymore of that guilt on our conscious.
Moral of the story: Don’t let a scare be your wake up call. Listen to your body. Do not take your health for granted. Don’t even taken mundane activities for granted, even something as small as being able to fold laundry without having to take rest break. Do something active that you enjoy and for a minute think of others that cannot do that themselves. Don’t allow this to bring you down, allow it to bring about gratitude for your body and your opportunities.
I decided to boost my confidence by dressing up to my follow up appointment only to have my vibe ruined by that stupid port. As you can see, getting ready now occurs on the floor and my massive dog likes to “help” so I don’t get dressed up as much as I used to!
Speaking of new opportunities and gratitude-surgery has officially been scheduled! I know we have already gone over my treatment plan but how is this for a new development?
November 3rd– nipple delay and sentinal node biopsy NICK’S BIRTHDAY
November 15th- double mastectomy and DIEP reconstruction MY BIRTHDAY
Seriously? What are the chances? 2016 will definitely be a year we will never forget. Luckily we have the rest of our lives to make up for it! Gag. I don’t feel like being that positive. Let’s be real, that sucks majorly.
I don’t remember how much detail I went in to with the surgery but basically the November 3rd procedure will be in and out in about 2 hours. The November 15th surgery will be 6-8 hours and I’ll be hospitalized for at least 4 days. After that I’ll have drain in for about a week until they’re pulled and I can really begin healing. Because they’re taking fat from my stomach, I am going to be slightly bent over for a couple of weeks. This doesn’t sound fun or comfortable in the least bit. People are recommending I sleep in a recliner (preferably a mechanical one) as I recover. Anyone have one of these laying around that I can borrow for a couple of months??? It was worth a try.
The last update is that I am moving my weekly chemotherapy appointments to every Thursday in Waco instead of Austin. My oncologist in Austin thinks this is a great idea because I’ll be able to work more which is what I really want. Nick and I are going to set up some kind of volunteer calendar so friends in Waco can help transport me to chemo during the week if he cannot make it. I’m honestly going to miss having chemo in Austin because it’s been so nice being close to my parents and feeling very safe. While I’m a little nervous about being alone up here sometimes, I think I have a great group of support to help me through this time. For all of that I consider myself so lucky.
Oh, I forgot! I landed 3 wigs I love so much. They’re not too hot, very comfortable, and super easy to care for. I’m actually having so much fun wearing them and styling them differently all the time. Here are some photos:
This was a long post but I wanted to update as much as possible so I can focus on other things the next couple of posts. Thanks for reading and for your ongoing support!
Here’s to our health, our happiness, and to Whitney Houston.