When my oncologist told me that chemo was inevitable...I can't honestly say in that moment I felt anything. I didn't even know what that meant. By the time I was actually able to process it, I had this vision in my head of permanently hugging that white porcelain with a bald head. I imagined I would probably just sleep there because I thought that's all I would be doing. The only knowledge I had of chemo was whatever I saw on TV and most recently that was Walter White (Breaking Bad) puking his brains out nonstop. I will tell you this was not the case for me and for most people it is not. I also could not get past the idea that I was, no doubt, going to lose my hair. I imagined going out in public and everyone would just know I was sick because, lets face it, when you see a bald women - its the immediate assumption she has cancer. I didn't want that but I didn't have a choice. This was something I had to do and so I continued to follow the path that my doctors would lead me through.
When I sat in that first appointment with my oncologist and we discussed chemo, she also informed me that I would need to have a port catheter so that my infusions would be much less painful and much easier for me and the nurses. In that moment, it registered to me. I have to have a surgery and be put under anesthesia. To most that may seem like nothing. To me, in that moment, it was like fireballs being thrown at me and I couldn't avoid any of them. Watch out you have CANCER! Watch out here comes CHEMO! Watch out YOUR GONNA BE BALD! Watch out here comes SURGERY! Watch out YOUR GONNA HAVE TO HAVE YOUR BOOBS CUT OFF! It was nonstop. I didn't want to hear anymore. I have never been put under before and I received a call the next day that my surgery was scheduled in 3 days. I didn't have time to think about what the hell was going on. Honestly, I didn't have time to think about anything that had happened in those first few weeks.
Monday came along and my port was placed. Surgery was quick and easy and I woke up. I was scared I wouldn't wake up for some reason. In pre-op my husband asked me what would happen if I didn't wake up. My response was "I guess Ill be in heaven". He replied with "that doesn't sound so bad does it". Weird to have that conversation but...it was true. With regards to the actual port itself...it was weird. I am thin and hated that you could see this round quarter sized lump in my chest at all times. My healing wasn't as simple as I have read most peoples have been. I am only saying that because I had a lot of soreness for a good 2 weeks. I couldn't sleep on my side for a long time because I could actually feel my bones (or something) pushing on the port. With that being said...having that port was worth it. The first time I had a needle put in my vein after I actually started chemo...OUCH!!!!!!! It made me extremely happy that I had that damn port and didn't have to have a needle put in my vein every time I had an infusion. So, if you have the option, I suggest you opt for the port.
Thursday after my port was put in I had "chemo class". My husband and I both went and it was basically an overview of the type of chemo I would be getting, what to do when you have certain side effects, when to call the doctor, the purposes of each chemo, and an overall explanation of what to expect. I remember my nurse practitioner looking at me and telling me I still had this look of shock of my face. She asked if I was ok. I am not even sure words came out of my mouth. I think I just shook my head with a "half yes" nod. Fact was, I was not okay. I mean, your sitting there reading pamphlets about fevers, diarrhea, constipation, nausea, throwing up, fatigue, hair loss, and a million other side effects you might have along the way. Not to mention, I was given a laundry list of items I would need to purchase to cope with every one of these side effects should I have them. The idea was to have everything on hand if something were to happen. My nightstand quickly became a mini Walgreens Pharmacy. I am not kidding when I say that. Not only did I own one of every OTC medicine known to man, I owned pain killers, anti nausea meds, anti anxiety meds, and what seemed like a lifetime supply of vitamins. All necessary to cope with whatever was about to happen to me.
So what is chemo anyways? I am not sure even after my chemo class, that I knew the answer to that question. I had no idea what to expect but in 5 days I was about to find out. My first infusion would be on Monday. Driving to that appointment, I cried. I was scared. I was also ready to get this damn show on the road. 3 weeks had passed since my diagnosis and all I could imagine in those 3 weeks was this cancer just growing and growing. I had MRI's and PetScans which proved otherwise but I just wanted to get the ball rolling and kill this shit. I packed my chemo bag with snacks, my ipad, a book, and we had brought a movie to watch. All things I was told to bring to occupy the 5 hours I would be there.
My appointment started off with a short 20 minutes with my nurse and oncologist. My onc would feel my tumor in that appointment for the first time and this would happen at the beginning of every appointment for her to determine if chemo was working. She would then walk me back to the chemo room and this was the only time she ever walked me back. It was as if she was holding my hand, guiding me in to hell. I do love my oncologist. She is amazing and I am so happy that I fell in to her hands of care....I don't want it to sound otherwise but I know she had to of known how scared I was in those moments before my first infusion. She introduced me to my nurse. Erin was new at the time and I remember her saying we were going to learn how to get me through this together. She said that to us, and I immediately knew she was the best nurse for me. I didn't feel like I was just some patient she was sticking with needles...I just really felt like she cared to actually be my friend through this hell. She talked me through everything, occupied my brain with random talk when it needed to be and always explained whatever it was she was doing. We would start with premeds of anti nausea, steroids, I think Bendryl and in no time...there came the bags. BIOHAZARD!!!CAUTION!!! Then I would watch as that poison slowly dripped from the bag to that little tube, all the way down until it made its way to my port and in to my veins.
My first 4 infusions would be Adriamycin and Cytoxan. Adriamycin - otherwise known as the "red devil" or the "acid of chemo". In fact, my nurse had to push this specific chemo through these 2 large tubes, by hand, basically dressed as if I was in quarantine. This specific chemo can eat away at your flesh if it makes contact...Sounds fun right? I was told this was the drug that would cause most of the side effects I would experience. I was given freeze pops to suck on while this was infused which would help with mouth sores. For some reason, I was more scared of mouth sores than any other side effect. Thankfully, I never experienced this side effect through out the entire 4 months I would go through chemo. However, I was warned about the "red devil" and how my pee would turn red from it, and it did, and I could smell the chemicals when I would during my infusions. But there I was...in my comfy clothes, walking around the treatment room with my infusion pole, pushing it along as I went to the bathroom and the chemo still dripping away.
So what was the first infusion like? Thankfully, pretty uneventful. Typically, there isn's much that goes on in that 5 hours. I guess I thought I would feel something...I felt nothing. I didn't immediately feel any sort of side effects either, other than from the steroids which made me want to run a marathon. Expect to hear a lot of beeping from the machines of patients waiting to have their meds switched up. Expect to pee A LOT. I suggest you eat a good meal on the day of infusion because you might not have much of an appetite in the coming days. Remember, everyone is different. As a matter of fact, the day I got back from my first infusion, I went for a 45 minute walk. It was my attempt to stay as active as I could through out chemo and since I was all jacked up on steroids...I took advantage of it.
I will talk about the side effects I experienced in a future post because I did not have as many side effects my first time around. In fact, the 2 weeks between my first and second infusion I thought to myself...I totally got this. That was easy compared to everything I was threatened with in chemo class!!!
Here is my advice to anyone currently going through chemo or who is about to start. These are things that were recommended by my doctor so, of course, please check with your doctor before you start taking any medications or vitamins. Some doctors don't want their patients taking anything and it would be nice if there was some sort of universal rule for that but there isn't. My doctor was one that encouraged vitamins and various other proactive treatments to avoid unwanted side effects - like mouth sores, nail damage, neuropathy, etc...
***SO IMPORTANT*** DRINK WATER!!!! I started drinking about 5 bottles of water the day before infusion and the day of infusion, I was constantly refilling my cup. This is what flushes all the crap out. I read this on someone elses blog and I will say there was one treatment when I did not do this and there was a huge difference in how I felt afterwards.
* Rinse with biotin 2x a day and brushed teeth with biotin daily
* Take anti nausea meds every 4-6 hours. Do not wait for nausea to come. Its much easier to manage if you stay ahead of it and for the first 5 days, I would take these meds by the hour
*If you are receiving Nuelasta shots for your white blood cell boost, take aleve or something similar the morning of and Clariton or Zyrtec. This helps cope with some of the bone pain you might experience.
* SLEEP SLEEP and then SLEEP some more. Don't feel guilty about this
* Eat what you can and don't focus too much on some sort of crazy diet. Yes, eat healthy, but if that's not what's putting food in your mouth then eat whatever is going down and whatever is staying there.
* I took B6, Vitamin D, and Acidopholis daily as recommended by my doctor
*Don't eat super hot foods - you don't want to burn your mouth and give yourself a mouth sore and try not to eat potato chips or crispy things that can cut in to your gums - I stayed away from Chips and Salsa for 4 months and I was always careful when I chewed on something that could potentially cut my gums.
*Allow yourself to allow OTHERS to take care of you. This is your time to get healthy and only focus on yourself
* REACH OUT TO OTHER WOMEN WHO HAVE BEEN THROUGH WHAT YOU ARE GOING THROUGH!!! I wish I would have done this because I know it would have avoided that feeling of being alone. No one can possibly understand the fatigue, the nausea, or the emotions you are going through unless they have experienced it. Go to support groups, email me, if you don't have a nurse navigator see if one can be offered to you.
Again, this first round I did not have a ton of side effects but I will get in to that portion of my chemo in next weeks post. I am not sure I can tell you to walk in to that first chemo and not be scared. That's impossible. Its the unknown. We are all different and there is no way to predict how any of this will effect us individually. I would just try and imagine it as it being the beginning of the end to your cancer. It's the only thing that is going to kill that crap and get you back to being healthy again. I fear ever having to go through that again because it is not a walk in the park. It's doable but challenging. Trust your doctors, trust your nurses, let your family and friends in, allow yourself to be vulnerable, cry whenever you want, and know that you will get through this.
First of all, the week break in my posts was because I was visiting family and friends over the last 10 days. I am pretty confident there weren't many people waiting by their computers on Monday for my post but I am going to trail off of my journey for this post.
I think the only way there will be any benefit to this blog is if my reader truly understands the feelings that a cancer patient goes through before, during, and after a diagnosis. Not only is writing in this blog therapeutic for me...I also know that I am not the only one experiencing these feelings. This may be an extremely vulnerable post but, again, if I am not being honest I am not benefiting anyone.
I do my best to stay positive. I hold my head up, and have a sense of pride for what I have been through. I truly do feel like a warrior. I feel like I battled the worst kind of war any human might ever battle. Sure, it could have been much worse, and I am so thankful it wasn't. Its those feelings that I try to remind myself of. I hold on to the fact that I am here. I am currently healthy. I am able to travel and see my friends and family, I have energy to walk daily and experience new things, and I have so much in my life to be thankful for...and in all of its simplicity....I AM ALIVE. I don't want any of this to come across as if I don't appreciate everything I have right now. I don't want it to come across as though all of my positivity and happiness is gone because it isn't.
There are no words that can describe how I felt when I received that phone call on April 8 telling me I no longer had cancer. In fact, I think it set me on a high for several weeks. Followed up by that high was continuously feeling better post surgery and knowing that some sense of normalcy was going to return to my life. Following that was the fact that I would soon see my brother marry his best friend, I would see much of my family I hadn't seen since my diagnosis, and I would visit my best friend as well. I was on cloud 9. After going through hell for 6 months...I had so much to look forward to and I was excited for every one of those moments to come. Seeing my family and friends for the first time, hugging them, knowing they were crying because they were just happy I was there...meant everything to me. I cant even imagine what emotions they were going through. There was not much they could do for me, other than "be there" for me while I went through everything.
Something happened last week and I am not sure that I can actually put it in to words but I can try. I am not sure that I can pinpoint why this happened but I have decided it's because that high may have temporarily worn off. I wondered if it was normal. I wondered if I put this out there, if a million other cancer survivors would step forward and admit that they went through these crazy feelings too. Crazy feelings...that's what it feels like. Its panic, its anxiety, its fear, its almost like an OCD feeling of what's wrong with me...something is wrong with me. My back hurts, my arm hurts, is there a bruise there...no there's not a bruise there...why does it hurt, my lymph node feels swollen, it hurts when I breathe...CANCER IS EVERYWHERE!!!! It sounds insane when I write that. I even find myself going through all of the facts and statistics. I had the most common type of breast cancer, that didn't spread to my lymph nodes and I had a great response to chemo. My pet scan didn't show cancer anywhere else. This is crazy thinking...I feel crazy! I feel crazy after typing all of that.
Not only was I dealing with those emotions, but I was also going through some of the physical obstacles as well. I know this all has to be perfectly normal. I'm watching my hair grow and I am so happy its growing...I really am...but I miss my long hair. I miss being able to put it in a ponytail and tucking it behind my ears. I find myself looking at these super cute short hair cut styles and I cant wait till I can rock one of those looks...but I'm quickly reminded its going to at least be another year before I can even do that. I don't even know where to begin with my mastectomy. It saved my life. That's the bottom line. For that I am so fortunate and thankful and blessed to have had the most amazing doctors to pull me through. At the end of the day, I have these insane looking lumpy rocks that look different every single day. I don't necessarily see the scars...that's not what gets me. They just aren't mine and currently they look like Frankenstein boobs. They aren't comfortable at all and I blame them for the majority of my back pain because that's way more realistic than the thought that I have cancer in my spine. Or maybe it isn't...I don't know. In that same breath...I flip my brain in the other direction. These expanders are a part of my journey, they are temporary, they will soon be gone...embrace them.
Maybe this is the Tamoxifen talking. I just know that this past week, I found myself spending a lot of time convincing myself that I was over analyzing every single little thing. I found myself feeling sad and worrying a lot. I am usually able to turn that all around as quickly as it comes but this past week was different. It left me wondering if this is what I have to live with now. Even that simple little thought scares me. Living with this much anxiety and fear...it seems pretty miserable to me. After speaking with one of my "breast" friends, Lynette, and hearing PTSD...it kind of made sense. Though I don't want to accept that it is something like that, it makes too much sense. I am thankful for women like Lynette in my life. Having other women who relate to every feeling I am experiencing is very comforting. I know I am not the only one who has these fears and I really want to open this particular blog post up to other women who are experiencing the same feelings. I think its extremely important for us all to know we aren't crazy, we aren't alone, and everything we are feeling is perfectly normal.
The quote I posted above is all I have to go on right now. I have to let my faith be bigger than my fears. I have to remind myself that I was given this path for a reason. I cannot let these fears consume me. It is so much easier said than done but I felt like it was important for me to get this out. I have full intentions of getting back on the horse with my "happy to be alive" attitude. I just cannot pretend that these feelings don't exist. I know all I can do is continue to eat healthy, work out, stay positive, and most of all...trust in God.
Being told you have cancer is something close to having your heart broken...probably worse. The only problem is you don't "move on" from this sort of broken heart. You become an entirely new person and while that new person may see life with the most amazing and clear perspective possible...you still have to figure out how to live with your new self...both physically and emotionally. Will your loved ones be accepting of the new you? Will they go on that roller coaster ride of emotions with you? Will they be patient with you while you go through all of the unexpected and confusing emotions? It is impossible that they could possibly understand exactly how we feel but that's why we have each other right? The only solace I find in any of this...is knowing I am not alone. I know these feelings are normal and I am not as crazy as I feel like I am. I really want to encourage anyone reading this to post your experiences below. Maybe you have some tips for how you get through these feelings, or maybe you just need to vent and let it all out. PLEASE DO!!!!
I had a really hard time picking out which photo I would use for this blog post. It was an emotional day for me. Its been an emotional journey for me. It is for all of us who are battling any sort of cancer. Not only do we have to cope with the idea that we have "CANCER" but its everything that happens along with it. It's not just your health that's taken from you, its everything else. I chose the most powerful photo I could find and that was my "fuck you" cancer moment. I was. literally, taking the power back in to my own hands in this moment. This whole day was so emotional for me, but I am so thankful I had my closest friends and family to hold my hand and keep me smiling through it.
It was about 2 weeks after my initial diagnosis that I would find out chemo was a part of my treatment plan. I don't know that I really understood what that meant but my doctors made it clear that I would lose my hair. Maybe I thought I would be immune to that side effect, I don't know. Maybe I was still in disbelief that any of this was really happening. By this time, my mother and father had arrived to get me through those first days of my diagnosis. I think I speak for all of us when I say that we were all just going through the motions in those first few days.
Everyone is different when it comes to how they choose to cope with the inevitable loss of their hair. Most women have a hard time cutting an inch off during a typical trim session but here I am trying to accept the fact that I am going to lose all of it. I have to somehow imagine myself bald. If you haven't read my "about me" section yet, you can see how beautiful my hair was. At the time, I felt like I was about to lose a limb. Looking back now, that was just silly. Its true, though. Even if you haven't had cancer and your a friend or family member of someone going through this...truthfully...this part of cancer might actually be harder than the diagnosis itself.
Cancer had already stripped me of so much in those first 2 weeks. I, personally, was not willing to sit back and watch as cancer took my hair too. I knew, almost immediately, that I was going to take matters in to my own hands. So I did it in the most powerful, controlling way that I could. I had a "shave party". I had a few friends, my mom, my husband, and my stepdaughter with me. All people I knew who would be a part of carrying me through the journey ahead.
This choice isn't for everyone. I support whatever decision you make to cope with your hair loss. Some women want to hold on to whatever hair they can through out their chemo. I've read and heard of women wearing cold caps which are said to help hold on to your hair. I want to share with you why I made this decision with the understanding that this is just one part of my journey. There is no right or wrong decision when it comes to how you will handle losing your hair.
Even though I was told I would most likely lose my hair 16 days after my first chemo, I chose to have my shave party as soon as possible. I had my head shaved about a week before my first chemo, approximately 3 weeks before I would even lose my first strand. In that moment, it was all I could do to take some sort of control back from cancer. I was not willing to let cancer rip my hair off my head. If anyone was going to do that, it was going to be me. I didn't want it to be a traumatic experience for me. I wanted it to be "fun". I wanted to smile at it. To me, it was like smiling at the devil and telling him..."you think you have me, you think your taking me down, but this is my story, not yours". I can say that the shave party made the initial loss of my hair a little easier. It was nice having my friends there to cry with me, to laugh with me, and to hold my hand.
It was Friday, 18 days after my first chemo. I was showering and I washed what little hair I had leftover on my head. This was the exact moment I was trying to avoid by shaving my head. I knew those little stubbles would fall out eventually, and it very well may have been easier than waking up with clumps of my hair on my pillow, but it still wasn't easy. I scrubbed my head and I felt the hair on my hands. I opened my eyes, looked down, and there it was. My hands were covered in little stubbles. I am not going to lie, I cried. I lost it. I don't know if it was because I still had this idea that it just wasn't going to happen to me. I think it was just the reality of, okay this is really happening, I am really going to lose my hair, I am really going to be...bald. I immediately got out of shower, screamed for my mom, and we pulled out the men's beard shaver and spent about an hour getting rid of as much as we could so that I wouldn't have to go through that again.
For those that have lost your hair...you'll totally get what I am about to say. For those that are preparing for it, you may or may not experience this. There is a feeling you get before you lose your hair. Its weird. The best way I can describe it is the way your head feels after you take a really tight ponytail down and your follicles are sore (or something). I was kind of prepared for a "feeling" but I didn't know what it would "feel" like to lose your hair like that. When I started to feel that, I knew it was coming.
So after I did that final shave, I was given another tip. Oh these tips, how we love these "tips". The joys of dealing with cancer and chemo and all of these crazy little tips we are given to cope with all of these crazy things that are happening to us. Take this, drink that, use this not that, don't eat this but make sure you eat something. So here's an interesting tip I was given. Buy a lint roller. Huh? Yep! When you start to feel that "feeling", run the lint roller over your head in the morning and at night. This process might take a couple of weeks before it all comes out, but it'll eliminate a lot of that semi painful feeling of losing your hair. I am not sure I would suggest this if you have chosen to hold on to your long locks. That might make it hurt more.
To wig or not to wig? I am not going to touch on this subject for too long. My mom purchased a very expensive wig for me. While I loved it, and in the moment it was everything I could do just know I would have hair there if I needed it, I only actually wore it a few times. Personally, I don't suggest you spend a ton of money on a wig but this is another one of those decisions you will make in that moment regardless of any advice you are given. Do what feels right for you in that moment. For my mom...I feel horrible I didn't wear my wig more but I know that she was willing do anything for me at any cost to take away my pain. That was priceless for her in that moment, and priceless for me in that moment. Your choice to purchase a wig, is just that, your choice. My personal advice might be to wait until your actually wishing you had one before you spend a ton of money, or to buy a less costly one until you determine how often you will wear it.
So this is where I am going to end this very emotional portion of my journey. Know that this is just another step of your journey. I promise you, your hair does not define you. This certainly was not something that happened overnight for me...so give yourself time to get here...just know its possible. You are about to discover a beauty inside of yourself that you never thought was possible. I know it doesn't seem like it when it happens, I know how hard it can be, I felt what you feel...what you felt. You will learn to love yourself without hair. You might fear walking out of the house without your wig, or without your head scarf but I am going to encourage to do it at least once. I did it once, and said goodbye to all of my scarves and hats at that point for good. I will talk about that more as I get further in to my journey. I just want you to all know how amazing you are, how beautiful you are, how strong you are, and to find it within you to truly embrace the fact that your hair does NOT define your beauty. You are of the few people who will ever get to see how beautiful their head is, how beautiful your face is without your hair hiding your eyes. Cry because its awful to have to go through the loss of your hair, but look at yourself in the mirror and tell yourself how beautiful you are. Once you embrace that beauty, I promise you will start to discover a whole new you. Beauty really does come from within and I truly believe that cancer, if anything, will introduce you to a beauty in life, a beauty within yourself, and in others...that you never even thought possible.
“The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen.”
― Elisabeth Kübler-Ross