Journal Entry: Tuesday, December 16th 2015

Today is the first day since before my first day of chemo on Oct 1st 2015 that I will write. I had lost complete interest in writing during those 4 doses of Adriamycin (aka Red Devil) and Cytoxin. Besides being very sick and very weak (and that is being modest; it was basically the worst accumulation of feelings I could ever imagine), I did not care or even want to in the slightest bit reflect on what I was going through. AND even if I did, I honestly think it would have come out in pure negativity; I was at a low state. I see it now…now, that I am hopped up on steroids at 4:00AM and cannot fall back asleep. This is MY time [apparently] to reflect with a motivated and “clear” mind. I had wanted to write again, but I just had to wait for the right time. I still have catching up to do. I don’t want to leave all of the details out during my first regimen of chemo because to me it is very important, but it will be in retrospect. Nonetheless, it will be a hard read for some. I cannot let go of how impacting every day has been since my ‘testing day’ on September 10th that ultimately lead to my diagnosis on September 14th. So, stay tuned for the remainder of my journal that would lead up to today.

It’s funny how when you lay in bed how many things pop up into your head, but when you go to write them down, you have forgotten probably 90%! Lucky for you! (I am long-winded as it is.)

Therapy. I have never officially done it, BUT I think this is something that I will take up. Besides cancer and treatment and my traumatic incident of 3rd degree chemical burns on my scalp (that I am STILL dealing with daily), I have a lifetime of effects to get off my chest. I find therapy in many ways and on different levels, but I am seeking a deep therapy for which I would break down my true feelings and understand how to compartmentalize better and throw out the junk that buries me into deep levels of depression and unnecessary stress…and to learn a better way of forgiveness, especially of myself (because I am very hard on myself…and that alone is difficult to admit out-loud, so I feel like I just made progress). I find it to be therapeutic when I write in my journal (but as you know, I cannot always bring myself to do it). I find it therapeutic when I walk and hike (not much of that anymore since it is cold outside…oh yea, and I have little energy to spare). I find it therapeutic when I exercise (though I can barely move half the time and when I do my headspace is full with a hyper-focus on critiquing my motions/technique and making sure I don’t hurt myself). SO, today I will seek a stranger, a professional stranger with the credentials to give me the tools to help me put my life into perspective and help heal me mentally and emotionally from the inside out. My body needs it; I am getting the hell beat out of me physically, which is crashing my mental infrastructure.

 

YESTERDAY

It’s worth ranting about. I mean, since I don’t have my therapist yet….

Let me preface by saying that I had convinced my oncologist to postpone the 1st chemo of my next regimen off two weeks, which inevitably had granted me nearly 5 weeks off chemotherapy. This was something to celebrate! It would give me time to recover from the punishment of the RED DEVIL and allow for possible healing of my poor, pitiful scalp wounds. BUT more importantly, it had allowed Ben and I to fly back home-home the day before Thanksgiving. It was so much excitement for me!! It was overwhelming! Thanksgiving has always been and big deal for my family, more so than any other holiday. I surprised my folks with the news via FaceTime. The look on my parents’ face and their lack of words (because they were scrambling for the right words to say…because they were so happy and shocked at the news) and the inescapable tears to follow…made it ALL worth it. I had a 2 ½–week trip home, and while it was so so so wonderful to see my friends and family, it was exhausting! I probably could have used two days of rest before I jumped back into my next treatment. Live and learn.

So, I am at the hospital yesterday doing the usual: first check-in, blood-work to follow (to be sure that I am okay to receive chemo), visit with my oncologist, then head up to the chemo-suite for a heavy cocktail of poison. Before I rant on Dr. Z, I want you to know that I do still respect his work and his objective-bluntness; I just don’t respect his attitude or is serious lack of ‘bedside manners’. Dr. Z, oh boy…he ticked me off today! Someone must have ‘pushed his buttons’ before I entered the room, because he was in a mood! He even bitched at his nurse in front of Ben and I. Unprofessional, geez. Dr. Z (as I explained in earlier posts) is a…this-is-how-it’s-going-to-be-and-I’m-not-going-to-explain-to-you-how-or-why-because-I’m-too-busy-for-those-type-of-inquiries-why-can’t-you-just-go-with-it-like-everyone-else-does-and-stop-asking-me-questions-that-challenge-me-because-you-know-how-much-I-hate-to-be-challenged-by-another-intelligent-human-being…type of guy. Well, that sums him up pretty good! Today, he was ‘that guy’ times 10. Listen, I don’t expect him to remember every little detail about my cancer or me however, I do expect him to have reviewed the pertinent details before I enter the room. He was scatterbrained. He couldn’t even find my lump! I told him I had a list of things I wanted to ask him about all of which were quick topics and very important, but God forbid that I take up HIS precious time (that I am paying for!). I asked him 2 things and he literally walked out the door while I was talking to him. WTF? Unprofessional, rude, disrespectful…and so much more! I can forgive the guy for lacking in bedside manners, but c’mon. When I told him I was having face neuropathy, he replied with annoyance in his face and a flat-abruptness in his voice, “I don’t even know what that means.” Oh. My. God. Yes. You. Do. How could he disregard this? But, he did. And that was that. Sooooo, I hope this new symptom of neuropathy doesn’t worsen. By the way, THIS is the worst way to start a day of chemo. I was already emotional and trying to ‘hold my cool’, but Dr. Z crashed me and I let loose the tears and agony as soon as I left his office. Honestly, I don’t think it would help at all if he saw me crash. I mean, I don’t think that the guy is heartless, but he is in no way empathetic. I feel as though my role is to be strong and challenge him with appropriate questions, but I have never been strong enough to pry him when he won’t answer me (or as dad says, “beats around the bush”). Ben and I were both caught off-guard today by Dr. Z that neither of us were ready to respond or take him on. I was explaining to my nurse in the chemo-suite about my visit and she understands Dr. Z completely (as all people do in that building…everyone walks on eggshells around him) and she recommended that I sit in front of the doorway on my next visit, that I do not let him walk out until all of my questions are answered. I have a follow-up with next week and I have a plan. My plan is to put him in his place, and I will not let him walk out on me…even if I have to remind him that I am paying for his service and if he cannot perform appropriately, that I will find someone who will!

It was nice that the pharmacist visited me during my treatment. He was legally bound to because I had started a new chemo-cocktail, Docetaxel/Carboplatin, of which I would be receiving 4 doses of administered every 3 weeks. So, if you’re counting…that means I am over halfway thru chemotherapy! The pharmacist clarified in detail the ‘whys’ and ‘hows’ for the chemo treatments based on my particular type of cancer. Thank goodness someone cares! He has a heart! Between the him and my nurse, they leveled my anger and hopelessness. I wouldn’t say that he explained beyond his scope; however, the questions I had asked him were all things that Dr. Z should have explained to me beforehand. The pharmacist didn’t mind at all; he was happy to help me thoroughly understand the statistics and the consequences of the drugs I am consuming during chemo. He explained (and I had NO idea of this) that the dosages that I will have gotten are the only chance for a ‘chemo cure’. I am receiving the full lifetime-dose of my current regimen and it was described to me as the strongest drug necessary to hit my type of cancer with probable success. Apparently, I had received half of the lifetime-dose of Adriamycin/Cytoxin, but that he wouldn’t ever want to administer more because of the long-term side effects that would most likely decrease my quality of life and longevity, especially considering my young age. It seemed as though his fear on this was that it could cause cancer [again] ‘down the road’ or serious heart complications. So, that’s fun. IF I EVER GET CANCER AGAIN, I will NOT be taking the conventional, western medicine route. My little body has taken too much abuse as it is. Had my cancer not been one of the most aggressive forms of breast cancer (stage 3, grade 3 invasive ductal carcinoma, triple negative at 7.5cm in size) combined with my young age, I would have been more compelled to utilize alternative methods…but even the integrative medicine institute that I called for a 2nd opinion told me to follow my oncologist.

I guess that leaves me with now. Now I will continue to move through my highly aggressive treatment and hope that I make it through with less symptoms (or less severe anyway) than my first regimen. The new chemo-drugs require a steroid, Dexamethasone, in order to control the life-threatening side effect of leaky capillaries. Simply put, without this steroid, leaky capillaries (blood vessels) would release excessive toxic waste into areas it should not, typically pooling at the lower extremities causing a serious inflammatory response and lymphedema (edema is swelling with fluid) which would make it very difficult to expel the toxins from my body creating a poisonous affect and a high risk of death. This steroid is not replaceable and no one even understands scientifically how it works on the capillaries, but it does and it is necessary. The problem is that I had been administered this particular steroid throughout my last regimen and it gave me alarming heart palpitations. So, on the last treatment, we decreased the dosage to a little over half of what I was receiving before and it put my body into shock (so maybe not enough steroid?); turns out it was not life-threatening, however it was terrifying because my entire body was shaking uncontrollably and it felt like my insides were going to explode (very similar to what an intense panic attack feels like, but just add the whole body into the equation). Again, I am so glad that I had 5 weeks to recover before this new regimen. For my safety, I requested to visit with a cardiologist, and (after jumping through hoops of course) I met with Dr. B who was absolutely amazing! He was understanding and he offered his time to answer and interpret all of my questions, AND he asked me about my opinions! I requested an echocardiogram/EKG just to be sure I was okay to begin the next regimen…and my heart showed good function with some unwelcoming PACs and PVCs. It’s a common side effect to chemo. Nonetheless, I requested a 30-day Holter Monitor that will literally monitor anytime I experience a heart arrhythmia. This is the piece of mind that I have been asking for for nearly 2 months! If an arrhythmia of high concern alerts the monitoring personnel, the on-call cardiologist will be notified immediately and I will be called. This is the type of service I appreciate and deserve. Wish me luck!

Lastly, I want to thank you for reading my life. I want to thank you for your support and I honestly hope that in some way, my reflections and learning experiences offer you something that you can cherish or pass along (relatively speaking). And those of you (and you know who you are) that have contributed to my well-being with donations, thank you. Never, not once, did I ask for $1, but so many of you took the initiative to help me during the hardest time of my life. And yes, this has been an unexpected hit, financially….and truthfully, it’s only the beginning. So again, I am grateful for your kindness. I will “pay” it forward because your kindness deserves it.

Journal Entry – Monday, 9/21/15

Summary: Short post….managing with the craziness and seeking 2nd opinions.

My head and neck swelling has gone down a bit, but not much. I have a little more range of motion in my neck. The (what I assume to be) lymph node high on the left side of my neck just under my head seems to still be inflamed. I woke up to my ear plastered to my head with ooz-crunchies. Not cool. My head felt like a paper-mache’d doll head. My whole head is oozing and hardening. So, yeah…super fun that I have an oozing and crusty scalp, which is clumping my hair and plastering hair against my scalp. The only thing that seems to break up the crusty grossness is to wash with shampoo and conditioner.

Today was basically a day of phone calls for second opinions. I spoke with a couple of naturopathic doctors and Sanoviv Medical Institute (Integrative Medicine) and Cancer Treatment Centers of America.

I’m trying to be more active to promote circulation and lymphatic movement. So, Ben and I went on a 6-mile long walk on the Green Belt along the riverside. I also did 40 squats, 40 high knees, 20 crunches and 20 bicycle crunches. Yea, it’s not much, but it was about all I could manage. I am still sore from the biopsies and….oh yeah, I have a wounded head.

Journal Entry – Sunday, 9/20/15

Summary: Short post of me bitching….yeah, basically that’s it.

It’s official; I have 2nd and 3rd degree burns all along my scalp and ear. I would say half of my head is 1st degree and the other half is 2nd degree with 3rd degree spots in the mix. Damn it! My head is blistered and oozing! The ooz is drying up and forming hard scabs on my scalp and tangling in my hair. My right ear is blistered too! This suckssssssss! Like really!? What the hell?! Really cashing in a lifetime-worth of bad karma right now. Anything else? I didn’t know I deserved this shit. I mean, I have had my forgiving moments, but yikes!

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All I want to is be able to dye my hair pink and Mohawk it and put football pink paint on my face to take on my first day of chemo on Thursday! That’s all I was asking for. I just wanted to ignore the pain and have fun with my hair before I lose it.

I spoke with my friend Steph today and she is going out of her way to help me. She is truly a beautiful soul. She created a CaringBridge and a GoFundMe account to help me share my story in lieu of all of the support from my friends and family.

I decided to get dressed, put makeup on and put my hair up in a pony (remember, my head is a nappy mess with one side bobbed and the other side shoulder-length). I am getting out of the house! Maybe I will have a glass of wine or a beer and watch some football. Maybe I will do just that! It is too beautiful to stay in and write. There will always be time.

 

Journal Entry – Saturday, 9/19/15

Sorry….if some of this material is redundant. I had previously posted on my hair catastrophe specifically….THIS post is simply my journal entry from Saturday. Lot’s of pictures on this one. 

Summary: Ben said, “I feel like I’m hugging a scarecrow.” Haha! I lost it; I belted out uncontrollable hard laughter. Something about it cracked me up. A scarecrow. I sure would serve the purpose of a scarecrow right now!

This morning I laid in bed until nearly 11AM. I didn’t feel much like getting up. I’m becoming skinnier day by day….I think just the stress of me knowing my reality is taking a toll on my body.

I got a message from my friend that said she was STILL eagerly awaiting my radical-change pics. I thought “oh boy, here it goes” and this is what I said:

< Let me preface by saying I really thought it was going to be a good day and boy was I wrong. I am starting to laugh about it now. It’s not at the funny-laughing-point; it’s more just that it is so insanely unbelievable…yea, that kind of laugh. >

To my friend:

I started by saying this, “ So, I had good news yesterday. Brain MRI normal. Yay! The sun was shining. I had zero appointments. I was going to make the best of the day and have fun. Ben and I decided that since I will be losing my hair, that we should at least have fun with it before I lose it. SO, we decided to go pink for breast cancer…to laugh in the face of cancer.” I continued, “I had an awesome gay dude, Nelson, working on us. We sipped on wine. Everything was good.

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I told Nelson to just do whatever. So he bleached us so that the pink dye would brighten. I wasn’t even thinking at the time that he was applying bleach (as we didn’t have a conversation about it) to my head. If I had known, I wouldn’t have done it, but my brain was overloaded, and I was like whatever bring on the color!”

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This is when shit got bad, “I had a rare adverse reaction to the bleach. I was under the hot dryer when my head began burning intensely. He said it was normal, BUT there is no way that this was normal! My entire head was on fire! My body went into shock. I couldn’t see. I had slid out of my chair practically on the floor. I was shaking, practically convulsing. I thought I was going to die. I’m not kidding; I thought I needed an ambulance.”

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Their call to action: “They rinsed my hair out immediately. The cold water felt amazing. The only time my body would calm even a little was when cold water was running over my head. They rinsed for about 10 minutes because every time they stopped, the burn came back and my body freaked.” In addition, “I also didn’t have any food in me. So, they gave me a few Triscuit crackers. I took two swigs of Coke for fast sugar. The burn wouldn’t stop, so they poured a pint of milk over my head. Ben’s head tingled a little, but it was tolerable (and apparently normal).” What happened next? Well, “We left the salon. I still had milk in my hair, half of a haircut and an incomplete blonde dye. We went home and put aloe on my scalp and I took ibuprofen for inflammation. The swelling continued and basically had taken over my whole head. So, we panicked and went to the ER. No worries, they said I would be fine. Swelling graduated down my neck and since then I have felt like I have a helmet on my head. The burn and aching has stopped, but certain areas are a bit tender, and I think I may have a couple of tiny blisters. My hair is so thin and limp. It’s not falling out, but it feels like plastic doll hair. I rinsed out the aloe and put coconut oil on my scalp and slept with that.”

The awesomeness continues, “This morning I washed and rinsed out the coconut oil and applied Moroccan oil. No aches now…just helmet head. Gah! Like wtf, right!? On top of that, we got a $15 parking ticket at the salon. THEN, Ben went to pick up food for us and ran out of gas during Bronco football game traffic. Yea, then the food made us both feel sick and we shit our brains out this morning. Oh, and I started my period this morning for the first time in 7 years because I have to go off of birth control.”

This morning, Ben sat down at the computer to pay the parking ticket. He started laughing (remember not the funny-type-laugh, more like the I-can’t-believe-this-shit-is-happening-type-laugh). He said the situation reminds him of Tig. Sidebar – last night we watched the documentary on the story of Tig Notaro’s fight to LIVE. Tig is a comedian that fell victim to c-diff, then her mother died, then she had break-up in the middle of the drama, THEN she was diagnosed with breast cancer. The documentary was super inspiring because despite her struggle, she was able to find humor in her circumstances….like how in the hell can she NOT laugh at the ridiculousness of her consecutive life events!? Yea, okay…back to Ben. He related to Tig, not with c-diff or death or a break-up, but because of the shit-storm of events that have taken place this past week and especially all that has happened one thing after the next yesterday. Like Tig, he thought, could there really be one more thing? Ben explained, “It really all stems from trying to do something fun…” I mean, we had ONE day to just forget the drama and let loose to have fun and be silly. We had ONE day to just laugh with each other and at each other as Nelson (the hairstylist) painted our heads with bleach. We brainstormed wild ideas and Google’d images for pink hair-dos. This was going to be an empowering event that Ben and I could share together. It would empower us to lock arms and fight as hard as we possibly can on that first day of chemo. We would capture pink and in our fierce revenge, we would wear it proudly from head to toe. Pink! It’s the universal color for breast cancer, but more evidently, it is a color that seems so delicate….and I will not stand for “delicate”. Delicate was my vulnerability for which cancer consumed. Delicate was my pride for which cancer humbled. MY PINK is for fighting. MY PINK is a mockery of the cancer that thinks it has a chance to survive in my body. Well cancer, you are a villain and MY PINK will destroy you.

To further MY PINK theory….I posted a picture on Facebook and announced my diagnosis with a heavy emphasis on my fight to kick cancer in the ass. The picture was of me at the oncology office. I was wearing the hospital gown that wasn’t really a gown at all; it was a cape, not kidding. I spread my arms wide and bent forward like I were to fly and Ben snapped the picture. I smiled and laughed.

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I was fresh out of tears in that moment. I found that the picture captured and represented my attitude completely. I had one person tell me that I looked like Bat-woman, that I was a superhero. That was very special to me. So, when I posted a follow-up “thank you” to all of the support in thoughts and prayers that I had received, I wore one of my favorite t-shirts; it said, “My dad is my HERO.” HERO was huge and in red ink and it was the first word (maybe the only word) that would be noticed in that picture, especially considering the content of my message. My dad is my hero and he always will be, but this message was to extend my gratitude to all of those who took the moment to comment on my announcement. Those individuals fuel my energy to fight! Those individuals are all my heroes…and they needed to know how important they are to me. They fueled my inner pink, my fierce pink and for that I am forever grateful, and for that I will forever fight, and for that I will forever continue to search for silver linings and have fun and laugh in the black face of cancer.

Back to Ben. In summary, he laughed because we started a day that would be a release from pain, that would be empowering and fun and what really happened, unexpectedly, was the complete opposite. Our decision to play with funky hair colors lead to extreme pain for me. Truthfully, I am not sure that I have felt pain so severe in my life. I am very surprised that my skin didn’t boil off. As if that wasn’t bad enough, upon entering the car, I noticed a parking ticket clamped under the windshield wiper wafting in the wind oh-so-fucking-gracefully. Perfect. Next, oh it just keeps getting better; my whole head swells and we freak, so we make the trip to the ER. As if things didn’t already suck, the embarrassment of being in public the way that I looked and especially at the ER was humiliating. When we finally made it back home, we decided nothing (besides the pain of my throbbing head and the tautness of my swelling) could get in the way of relaxing tonight. So, we ordered Thai and planned for dinner and a movie all snuggled up on our comfy couch. Ben left to pick up dinner and the car ran out of gas because we’ve been too distracted to fill the freaking tank up. He was stuck in college football game traffic with drunk tailgaters surrounding him. So, Ben walked to the nearest gas station (after he pushed the car to the side of the road), which he had originally passed (as he was on his way to fill up the gas tank) because the gas station pumps were taped off. The station was about a block away, mockery! He bought a $15 gallon of gas because he had to buy a gas can to transport the gas to the car. No big deal; it’s just money. Gah!

The process of getting gas to the car took about an hour which led to us eating carryout Thai food that had been sitting in it’s Styrofoam container for over an hour. Gross. To our surprise, it tasted fine. It wasn’t like a mind-blowing-oh-my-gosh-this-is-amazing-food experience; it more of a this-will-do-considering-all-things-today experience. AND then our guts suffered. What the heck was in that food? It tore us apart. Our bellies cramped…Ben calls it the BGs aka “bubble guts”. Nobody wants the BGs. Nobody.

So that was the story that pretty much summed up yesterday in detail. Today we tried to laugh at the situation. We figured we should nickname my tumor. Villain, Corilla, V-Cup, Tifferific vs. The Tumor….these were all great options. From the feedback I am getting on Facebook, I guess my hero alias is Batwoman. It seems to fit well from my bat-winged-cape-gown-thing that I wore in the oncology office. Too funny!

My nappy-hair update of today:

Well, my hair is clumped hard around the scalp. I’m thinking I didn’t get all of the aloe out of my hair and it’s hardened. I mean…It. Is. Not. Coming. Out. I haven’t been able to take a hot shower for fear that it may reactivate the burn. Tomorrow will be okay though, I hope. I don’t feel as though the swelling has gone down at all because I still have helmet-head and my neck is very stiff. I’m still taking ibuprofen to keep the inflammation down and taking extra antioxidants for the same reason. The aching has completely dissipated, so that is helpful. My scalp is still very tender to the touch though. The edema is freaky; it has made my head feel soft and spongy kind of like a newborn baby’s head (except swollen). The edema makes squishy noises and feelings. Eek! I had turned my head a little earlier and I could hear and feel the squish; it was the fluid squeezing from one area to another! Ew!

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I sent my sister a better picture of myself. I teased her; she is blonde…I said, “I didn’t know being blonde was so painful.” I cracked myself up.

Ben was behind me and hugged and held me. We shared a loving moment and then he said, “I feel like I’m hugging a scarecrow.” Haha! I lost it; I belted out uncontrollable hard laughter. Something about it cracked me up. I guess I am getting to the point where I can find it funny now. My hair was so crunchy from the oil conditioner that it felt like (and kind of looked like) straw. A scarecrow. I sure would serve the purpose of a scarecrow right now!

Toby and Ben played “king of the bed”, a made-up game between them to see if Ben can push Toby off the bed. They play so hard that Toby has to run off occasionally to get a drink of water. They are both growling. It’s hilarious! Toby always gives up; it’s almost like he gets pissed off and just lays down and pouts, but then comes back for more….but a different game. Ben mockingly states, “I guess you don’t want to play anymore. You don’t want to play because you can’t win.” Toby is our dog-kid. Yep.

 

My day….is not suitable for Facebook viewing. BUT it’s totally worth a blog post. For over an hour today, Ben worked on my scalp wounds. These suckers just don’t want to heal. Maybe I can catch a break with a [whole] month before my next chemo.
This is for YOU….you know for you interesting people out there like Ben who totally dig all of the disgusting things in life like scabby-oozing wounds. Yuck! YOU know who you are…you scab-pickers, you skin-peelers, you zit-poppers! Ew!

After the hair and scabs pulled apart.

Up close and after ointment

A horn…?

 

Seriously though, Ben made a video of himself pulling hair out of a gross scab on my head…but my boob got in the shot so we had to delete the video. Haha!