TaTa to the Tata’s

 I have been contemplating the words to use to express the emotions that I’ve been feeling with this next chapter of the journey. The emotions and the feelings that one would expect to be present, are. But the words are hard to come by. How do you convey the sadness and anxiety and fear that you feel while also conveying gratitude and joy that you are still alive to feel those negative emotions? The struggle is real. But when I really think about it, it’s pretty relavent to how my day to day is. Ups and downs , highs and lows, smiles and frowns. 

Before I get too deep down the mastectomy rabbit hole let me express how amazing my friends and family were during my last chemo. There are struggles in life that can break you. Had I not of had the love and support of my friends and family, this struggle would have been one of them. Instead, I felt blessed and uplifted in a way that I never thought was possible during such a hard day. My loved ones lined the street of the hospital, holding signs and yelling words of congratulations as I drove in for my last dose of poison. My nurses dressed as unicorns and stayed late the night before to decorate my room. All inclusive with a selfie wall of course. My last day of chemotherapy was filled with love and joy. I rang that chemo bell and surprisingly, didn’t want to run like hell. As I expressed in my previous post, I was not happy to be done. Instead I was terrified and felt lost. But with the positive vibes surrounded around me it was easy to feel flooded with positive emotions. It also helped that after a quick measuremt of my largest tumor I was told that it was maybe 1x1 where it had been 11x8! For the first time in this experience, my mom let loose of her emotions in my presence and showed her concern and joy all in one melt down. To see how happy she was in that moment, and how scared she had been and still was, gave me so much motivation to continue fighting just as hard as day one. No matter how tired I was. 

With the last round of chemotherapy comes the first step of the next chapter. I’ve taken this process one day at a time which has allowed me to block out the fact that I would be having surgery. It wasn’t something I had to think of for 16 plus weeks. Well I am not sure where the hell those 16 weeks went to because they flew by faster than the road runner running from the coyote. And just like that, it was time to prep myself for surgery. (Drinking game alert. Drink one for me every time I say “surgery”. If you make it to the end of this post, you’re a true champ) 

I was scheduled to have a bilateral / contralateral prophylactic mastectomy with a sentinel node biopsy and port removal. People asked how I felt about the upcoming surgery and honestly, I had no response. It was what it was. It’s not like I had a say so in what was going to happen. So I found myself in denial to the fact that it was actually happening.  Before I knew it, my denial had conjured up an actual delay in surgery. I found myself having a hard time breathing when I would do basic things like walk, or talk. Those who know me are aware that I can go without walking, but talking is another story. There is no silence to be had from this girl, even if it means having a straight up asthmatic attack. After speaking to my oncologist at my post chemo checkup, and running a couple of tests on my oxygen levels, I was set up to have a CT scan to look at my lungs. In the meantime, for research trial purposes I had to have another mammogram before I was able to have surgery. Will I ever know the results of this test? Probably not. But for future patients on the trial drug I received, it’s important. So I found myself at the hospital day after day again. Getting the results back from the CT scan showed that I had three concerning spots of inflammation on my lungs and I was in need of seeing a pulmonologist. The problem with this was that the results were given to me on the Monday prior to my Wednesday surgery. The pulmonologist held all the cards and had to give the okay to go ahead with surgery. Let me tell you something... as if it isn’t nerve racking enough to know that you are scheduled for surgery in two days to have your entire chest chopped off (I could have worded that better. But let’s call it what it is) but then to be told that while you have been mentally preparing yourself for this big surgery that it may not happen for several weeks now...complete melt down. I felt more emotions over the potential of surgery not happening than I had over the months of anticipation of it occurring.  Even worse news, I wasn’t able to get in to see the pulmonologist till Tuesday! All I can remember saying over and over was that this was bullshit. Pardon my language. But again...Let’s call it what it is! How do you prepare yourself for something that in the back of your mind you know may not happen? After a couple of days of bad breathing attacks over the prior weekend, I was concerned about how low my oxygen may of been dropping while I was taking care of my son. The last thing I wanted to happen was to pass out while I was home alone with him or driving. Did I mention that two weeks prior I passed out half way through the cupid shuffle at a wedding? How is life so unfair that at 33 years old, I couldn’t even make it through the freakin Cupid Shuffle?!  

Returning to the doctor just to check my oxygen I expressed my fear in my breathing problems delaying my surgery. Kristyn, the amazing (I’m open to suggestions on other words, as I know I use “amazing” a lot) prompt care doctor made a generalized assessment that made me feel more confident that I wasn’t going to have to postpone surgery. That was prior to her having me do a 6 min walking test around the building. That confidence wore off quickly when she saw my stats drop to the low 70s. When Kristyn gets nervous about things, that’s when I know I should take it seriously. With her new statement of “okay. So they may actually postpone your surgery” I found myself even more anxious. But all I could do was wait and see. 

At 3:30pm Tuesday afternoon, I had a series of breathing tests followed by my follow up with the pulmonologist. With my breathing tests scoring 70% , and my oxygen rising back to normal as soon as I was at rest, he felt comfortable with giving me the okay for surgery the following day! With that okay came a warning that there was a chance that I’d  have to have a ventilator after surgery. { Insert all the feelings. } I was so certain that he would be uncomfortable enough with my breathing problems that he would cancel surgery for the following day. Instead, he gave me the okay with a potential risk of not breathing on my own after surgery. That didn’t make me feel too good. But also, I wanted the okay, and got it. We are doing this. Tomorrow morning. Bright and early.  After that soaked in... I remembered I didn’t do laundry, pack a bag, grocery shop or clean my house in preparation because what doctor is going to clear someone for surgery with a 40% chance of needing a ventilator after?! I left the office making all of my phone calls, preparing my family for the next day and figuring out how I was going to get a million things done in less than 15 hours. One of those things being calling the medical supply company to set up my oxygen tank I was ordered to have for the following 6 weeks! There was so much to do, I couldn’t even think about the fact that I was just told I needed oxygen to breath until the damage done to my lungs by my chemotherapy healed. 

Remember a couple of posts back when I said that everything that could go wrong, seemed to always go wrong during this battle of mine? Weird things that don’t happen to other people seem to always happen to me? Well... as if getting the okay less than 15 hours prior to surgery wasn’t crazy enough... grab a seat and let me tell you an even crazier story. 

After a night of zero sleep, anxiety, fear, and feeling myself up to soak in and remember what it felt like to have my boobs, my companions for the last 33 years, I arrive at the hospital only to find that my name is nowhere, I mean No Where to be found on any surgery list. Apparently the I’s were not dotted and the T’s were not crossed, and the approval didn’t get to the appropriate people. 

...So you mean to tell me that I was having surgery. Then not having surgery. Then it was  back on again, I show up bright and early with my family and my son with a babysitter , and you can’t find my name? You better check again Janet,  because there’s no way I’m leaving this hospital with my boobs still attached!! 

The mind games that had been going on were enough to make anyone crazy. I felt like that one friend that everyone has who breaks up with their boyfriend for good, but then goes back , and then calls you a week later to tell you...again... that it’s over for good this time, and then you see their post on Instagram celebrating their 4 month anniversary. I was so mentally drained that I couldn’t even fathom how I was going to control the anger I felt in the lack of preparation made for what I considered to be a huge surgery. 

Thank goodness my step mom works at the hospital, and took control of the situation before I made a scene. With her help she had me back on the schedule a couple hours later and we were ready to do the damn thing. At this point, I just needed to focus on two things. Trying not to freak out about the Sentianl Node scan that I had heard was extremely painful. And secondly, trying to convince the triage nurse to give me a double dose of Versed.  That lovely medication that calms your nerves and makes you forget everything that happens from the moment it hits your veins. Lord knows I needed all of it. Every drop that I could get. There was nothin about this experience I wanted to remember. Luckily, I received a Valium prior to the lymph node dye that burned like the devil, and I’m persuasive enough to get that second dose of Versed right before heading to the opporating room.  After that moment where the nurse was angelic enough to make that second dose happen, my memories are few and far between. Apparently I became a little emotional before being put under, and my sweet surgeon held my hand until I was out. The doctor told my family that it was an uneventful surgery which meant that everything went as it should have. (Can you believe that?! If something was finally going to go right, I’m so thankful it was now)  He removed my port through my mastectomy incision, and three lymph nodes under my left arm. Because I have to have a delayed reconstruction, my consult with the surgeon and plastic surgeon prior to the big day resulted in the decision to leave a little bit of skin around each incision. Because I am to have radiation, my skin will become hard to stretch for my reconstruction so this was the best option. Looking at it now, makes me want to cry. And the emotional hardship of looking like Frankenstein is impossible to explain to people when you don’t want to be that brat that’s so vain that you are upset about how you look and not grateful just to be alive. But in all honesty, looking in the mirror now makes me cry every time. Thinking about how I look makes me cry. Call me vain. 

While the surgery was uneventful, the night after surgery was anything but. According to the three people fanning me for hours, my dear friend rushing to Home Depot to buy me a fan, the two people interchanging the cold washcloths on my forehead and neck, and the nurse the following day who informed me that I was given 4 different nausea meds before I was able to not dry heave the food I wasn’t allowed to eat prior to surgery... it was a rough night. Thank goodness for that Versed because the only things I really remember are feeling like crap, and someone feeding me a cracker that turned into cement in my mouth. I’ve had a good ol’ hang over in my lifetime but I’ve never experienced cotton mouth like that.  Now it’s a waiting game. We wait for pathology to come back and tell me if I am cancer free or not. Which means I am holding my breath for the next several days. 

With everything that had happened within that week, I was spent. I didn’t know how I was going to also deal with the emotional turmoil of what had actually just occurred. I’m 33 and I just had my body mutilated to save my life, after 16 rounds of chemotherapy that already did a number on my physical appearance and health. For the first time I was speechless. To this day, I’m still speechless. Maybe that’s why it took me so long to write this update. Maybe that’s why this post isn’t the most exciting to read or is just a play by play of what happened with little to no puns and fun analogies. But finding the words to express how sad I am... How terrible looking in the mirror makes me feel. How hard it is to have my mom and husband bathe and dress me. How sad it makes me to not be able to pick up and love on that sweet boy of mine. How helpless I feel having to have my husband carry my oxygen tank for me, just to walk to the living room, because I can’t lift more than a coffee cup... finding words to truly express the magnitude of those emotions, is impossible. Especially when you don’t want people to think for one second that you aren’t thankful for still being alive.   

My nurse Amy, who I have done all of the raving about since day one seems to always have the perfect words. Words to bring me off the ledge and recognize how to get through the emotions I’m feeling.  So for now, because I can’t find the words myself I find myself re-reading her words over and over. 

“ Know that you are beautiful - scars, steroids, bald head and all! Your body is fighting one of the WORST and meanest of diseases - you’re going to get some battle scars. but that’s just it! it can serve as a reminder of the faithfulness, protection and provision of God.  So every time you look at it, let it remind you how great God is for delivering you and fighting for you/protecting and healing you this far! That He has a plan for you and it is good! A more positive, and I believe truthful, approach to looking at the scars and weird skin.  (And if it’s hard to believe that to be true, just ask Him to show you and help you believe. He’s all about helping us in our unbelief if we just ask.)” 

So for now I will continue asking Him to show me His plan. Until then, despite how hard things are right now, I’m grateful to live another day and excited to see what this battle has been preparing me for.  

Thank you to every one for the prayers and support and for wearing your warrior t-shirts the day of my surgery. I’m so blessed to have an army to help me fight.