The War Rages On...

I'm writing you tonight from the comfort of "my" bed, here at my parents' house. Lying next to me is the world's number one bed hog, Sammy Lanchantin. I push him over to the other side of the bed, and within minutes he has shimmied his way next to me, which is more like latched on to me, a lot of times with his arms intertwined with mine, like a little monkey. This is all amazingly lovely and frustratingly uncomfortable all at the same time. We are in a queen bed and we might as well be in a twin at this time, in fact, we could both try and share the toddler bed and see how that goes! But I digress...
Treatment has been, well, trying. I started off with Taxol. All was well the first two times, aside from the fact that I was bedridden for most of those two weeks. Severe muscle and joint pain that never let up. I was eating pain killers like candy, sleeping non-stop and awaiting bedsores to start arriving! My mouth bled and had rivets down the sides of it, as if I had driven a truck full of glass schards down the sides of it. Food became a luxury that I was not interested in. Why eat when you can't swallow or chew because your mouth is on fire? My skin broke out because it didn't want to be left out of the "Attack Jodie's Body Party." I was the whitest shade of pale. There was no life in my eyes. I cried finally to my mom and dad, that I knew why people gave up the fight. This was a nightmare of epic proportions that I was trying to live through. I got to my third treatment and my white count was so low they contemplated throwing me in the big house...you know, the hospital. You know a place where germs vacation. I was sent home, told to mask up, rinse with a "Magic" mouthwash that was the equivalent of eating 5 sucretes and try and get my counts back up by eating and drinking.
Taxol treatment 3, was anything but boring and routine. I had been warned about allergic reactions, but this was one hell of a shock. The medicine dripped down my line and into my port. I laid back to get some sleep because IV Benadryl makes me feel like I have been hit by a tranq dart. But it started as almost a tickle in the back of my throat. Then I started to feel as if I was getting hoarse. I opened my eyes and looked at my mom and went to talk....uh-oh, I can't get the air out. Mom started yelling, 'She's having an allergic reaction!" she ripped the oxygen off the wall and threw it over my face, at this point my breathing was extremely labored. The nurses came running and I managed to see a crash cart being wheeled my way. Mom was my steady presence, "Just breath, slow, breath nice and slow" I tried to keep my panic at bay, but this was crazy! Drugs were ripped open and put into my tubing. My back started throbbing. My blood pressure was through the roof. But I was just breathing, just breathe. And within minutes, I was normal. THe pain subsided, the airway opened. I was me. My mom, not so much. Terrified. Can't say I blame her. So I was told to rest and relax and they would rechallenge me (give me the drugs again) in 30 minutes. I braced for another attack 30 minutes later, but everything went fine, and I received my treatment and headed home.
Next treatment, the nurse stayed right with us. Although I thought it was a bit overdoing it because I was getting a hydrocortisone shot on top of my other steroids and had been fine when I was rechallenged. Wrong. Six minutes into the infusion I could feel a wall of fire travel up my chest and onto my face. My throat was scratchy again and my back pain returned. Instantly the nurses went into action and I was fine again within minutes. My doctor had seen enough. He sent me home and was putting me on a new drug that was the same drug, just in a different solution.
I have now had 2 abraxane treatments and am happy to say that they are going well. I don't need premeds with this drug and I am done within an hour usually. However, I did land in the hospital with a fever after the first treatment. They attributed it to dehydration and gave me some IV antibiotics. I attributed it to the Zomeda infusion I got for my bone mets. I found online that it can cause a higher fever and you need to drink lots of water before and after it. So my research put me in the know for next time.
My white counts have become the bane of this whole process. I was put off again for my last treatment because of low white counts and neutrophils. Its all a numbers game, and perhaps that's why I don't enjoy gambling. And me, the absolute control freak, hates that I can't really do anything short of voodoo to get my white count up. Yes, there is a shot that I did with my chemo last year, but that needs a certain amount of time between treatments and I don't qualify for that. What's happening is my bone marrow is getting wiped out by the time I get to my third treatment. It's just not bouncing back enough for treatment. If they were to continue with treatment, and wipe it down to nothing, I would be susceptible to things like the common cold which could land me in big trouble with no immune system to fight it. As it stands right now, my immune system is ebbing its way back to "normal." but that's all it can do.
This treatment plan has made me a pill junkie. Every morning I go to my med strip (yes, I'm 36 and have a med strip) to take my series of pills and vitamins. Here's what I'm on these days, try to keep up:
Effexor--antidepressant, because without it I'd be crying in the corner
Water pill---blood pressure med
Norvasc--blood pressure med 2
Potassium--mine gets low and I have to take a prescribed amount
Calcium/Magnesium/Zinc--vitamin to help with calcium being drawn out of my blood by zomeda to prevent fractures in my weakened bone mets
Vitamin B complex--to help with nerve pain and neuropathy that this treatment ultimately leads to
Vitamin D--everyone needs that that lives in Syracuse, but I think there is a treatment reason to
Vitamin C--I'm now drinking the voodoo kool-aid and seeing if this helps up my white counts
Folic Acid--read that this helps with white blood cells as well, again voodoo
Colase--because when you take pain pills, there aint no way you are going to be able to stay regular. Gross.
Night time, Ambian--Cause a girl has to sleep at night, not during the day anymore!

I have gotten myself some yogurt and some garlic, because again, trying to voodoo method of upping my white count. Of course you don't eat them together....but I gotta try everything. There is no more frustrating feeling in the world than going to HemOc, waiting on blood draws and finding out, nope, even though you feel fine, you have to go home. Can't tell you how many times my schedule has been changed at this point. I can't make any kind of concrete long-term plans because what may be my "good days" now could be treatment days after next week. Right now we are settled on a 2 weeks on, 1 week off schedule. My fingers are crossed this will work.
I want to get scanned (never thought I would say those words!) to see what's going on in there. My liver has definitely changed. It's not lumpy and bumpy and most days I forget that I have problems with it. Sometimes I will get a pain, or feel it somewhat tighten up. But most days, I feel almost, dare I say it, human? No day is normal though. And I think that's where the misconceptions about cancer come in from outsiders.
You see, being stage IV means mine isn't ever "going away." My cancer has already spread to my bloodstream, it's in my bones, and its in my liver. I will never technically be in remission or cured. I essentially am living with a chronic disease, like say, diabetes, or MS. And I can learn to live with it and the stress that entails, or I can give in and give up and focus on the bad stuff. I try to maintain the positive focus, the fact that I am able to function most days but I do need tremendous amounts of rest. I've become the unreliable friend, sister and daughter. I can feel fine one day, then BAM! It's like a Mac truck hit me and I need the bed all day. There is no rhyme or reason to it, I'm still not sure when my good days are and bad. Being unreliable is something that bothers me throughout all this. I was never that person that cancelled. I always slapped on some makeup and made shit happen. But it's no longer that easy. For me, it's becoming harder and harder to get out there. I have a wig now, which is beautiful and classy, but I'm not wearing it every day. When I wear it, I feel like I have to be done up with makeup, otherwise I look like someone who did their hair and stopped at that. It looks weird. Plus throwing a hat on is so much easier than tugging on a wig and making sure it's looking right. One time during my last treatment I had a person tell me to "try a little, at least put on some lip gloss or something." It was so hurtful to me. It made me feel ugly and less feminine. But the truth is, I don't like covering up the reality of cancer for the benefit of others. You want me to look good so you don't have to feel bad for me? Save it. Now that my skin has erupted in acne, I have even less ambition to put on makeup. And then there are my eyebrows and now my lashes. I've always had thick, bushy man like brows. Just look at my senior picture. I'm almost a unibrow. Bert from Sesame Street is jealous of my look even. Now, they are these sparse, weirdly patchy things above my eyes. I don't even know what to do with them. I've attempted drawing them in but they just look confused. and again, if I draw them in, I'm committing to a whole face full of makeup. And my lashes...ugh. More and more are falling out everyday. They are starting to make my eyes dry and uncomfortable. It's weird how naked your eyes feel without them. They are very sparse and when I put mascara on them it's like you have  3 spikes coming out of your lids....its weird.
In the last two years I haven't really had to dress up for anything, so the loss of my hair and such has been ok to deal with. However, this spring I have a cousin's wedding and I am IN my sister's wedding in September. Hence the wig purchase. And now the false lashes and brow pencils and stencils. Plus my eyebrows are so confused, parts have grown back, but I have great big holes in other parts! So getting dolled up, something I so used to enjoy, is now a chore. I hate it. I don't have dresses that fit me because we are still working on losing the baby-weight and I'm in treatment so they don't want you losing weight really either. I no longer know how to shop for anything other than black yoga pants. If I could get away with it, I would be wearing them in the wedding. We got measured for the dresses and I was less than thrilled. All I want to do is throw on one of those waist-trainers, try one of these cleanses, and do the P90X or whatever the latest craze is!!!! But I can't. A waist trainer would abuse my already poor functioning liver and probably fracture my rib with a bone met. Can't do a cleanse with any wild vitamins or foods because so many things out there mimic estrogen and my cancer is estrogen positive. And exercise I can do, but nothing drastic. I'm likely to end up in traction if I overdo it. As it is, I rejoined the Y with the family and I did a grand total of 20 minutes on the "monster" as my friend Mary and I affectionately call it, and I was done. There is no such thing as a diet for me now. My tastebuds have died and gone to heaven. I now eat bizarre things and usually very bland stuff because that's all I can stand. So what I am getting at is, this sucks.
I had a very productive day yesterday, got some things done and played outside with Sammy for a bit. Thought I did pretty good for myself. Ended up sleeping until 3 today. And I SLEPT! My body is on a constant see-saw of good vs bad. and sleep is a vital part of me having those good days. Just because I am out of treatment for a week, does not mean that I just bounce back and can be like everyone else....although I wish it did. Those drugs are still circulating in me, killing off cells, making me fatigued. You see, the war is constantly being waged within. I may be smiling, wearing a wig, heck I might even have jeans on!! But that doesn't mean you should think I am good to go. Chances are, the next day I will be bald and in my nightgown, popping pain pills and angry with myself for overdoing it. Unless you are living it, you aren't in it. My husband, my mother, Sammy, and yes, even my father somewhat is starting to understand, that this is a day-in, and day-out lifestyle that will never go away. it makes me miss out on a lot. It makes me piss off a lot of people. My plans are always subject to change.....and a lot of time, they do.
The ones that truly understand my plight are dwindling day by day. In the past month, I have lost several people who have set out on their own cancer journeys and befriended me along the way. My prayers for miracles have now turned to prayers of healing for so many. I've seen families become fatherless and young mothers go into liver failure and pass. I've seen young activists who were viewed the strongest amongst us, taken. Months ago these same people were posting pictures at the beach, talking about new hair-dos, smiling at weddings. Living life. Then like that, the cancer showed up, unannounced and uninvited, to the party. It's just that, a party crasher. Cancer takes all your dreams, goals, and plans for this party we call life, and upends them, crushes them, and leaves you at its mercy. Is this treatment going to work? Will this scan show the all-clear? Will doing this procedure, lead to complications somewhere else? Should I even consider the treatment? Or am I just taking shots in the dark that will leave me dying a death I don't want? These are the questions we are faced with everytime we walk into the doctor's office. EVerytime we feel a new pain. Every time we get nauseous....is it the flu or is it brain mets? I can assure you that you would never want to pull the balancing act that I pull in my brain. What do we worry about today? And if I don't worry about it, will it come back to bite me in the butt? It's neverending.
We honor their memories by trying to live, for being their voice and continuing the fight. So although I may be unreliable, walking around without make up on and sleeping all the time, know that I am waging a war that you can't see, and therefore you can't judge. I'm definitely not the same Jodie, but I am definitely a blessed person who quiets the ticking time bomb as best she can by being there for the others and being honest about who I am with this disease. I'm determined, I'm scared, I'm positive, and I believe. And believing is knowing that I got this!

In the Still of the Night

I'm not going to bore you all with the "sorry it's been awhile" crap. I've been out-of-touch for several good and several not-so-good reasons. The good being I was out living my life. Taking the family on spontaneous trips this summer, going to the pumpkin patch, riding ponies, picking apples. We got a tree and decorated it together as a family and Sammy learned my love of all things Rudolph and naturally became obsessed like his mother. We opened gifts at our house, watched him marvel at Christmas lights and gradually become a fan of Santa and not a terrified mess of the stranger with a beard. It was a struggle, but now he loves "Ho Ho." Things were looking up, but we were never far from the cancer diagnosis. I had scans every month since my treatment ended. Things like head pain, neck pain, routine exams, then pain in my abdomen and then ever so slowly, my liver functions started to creep back up. By the end of treatment, they had gone almost back to normal. By September, they slowly began their uptick. I was taking my Tamoxifen, getting the shot in my butt monthly, and doing my part to stay sober and still enjoy my summer. I knew by October in my mind, that things were heading downhill. They found a spot on my spine, the T9 vertebrae. This triggered a PET scan. I had gone alone to my CT appointment (first time ever) because I was sick of depending on others and knew I was strong and honestly, there comes a time in your treatment, where you just want to be left alone. It sounds selfish, it sounds ungrateful. But you want to cry your own tears, deal with your own pit in your own stomach and not have to glance around at your loved ones and see how you have broken their hearts.
Being weak, crumbling in a parked car on the far edge of a parking lot, kicking and hitting the dashboard where no one can see or hear your gut-wrenching bellows or sense your terrifying thoughts of obituaries and funerals, and how you will prepare them, all of them for the possibilities of a life without you....you it's overwhelming, it's hopeless, it's numbing. But if I can do that alone, even for just five minutes, I have let the grief out instead of letting it build. I have allowed myself time to take care of me and to wrap my mind around all the things that race through your mind with reoccurrence. It's like being diagnosed all over again.
The PET scan showed increased "hot spots" in my liver, but my doctor wasn't convinced this was bone metastases. Then in December we rescanned, and it had grown. I was sent to the radiologist oncologist who met with me and really didn't think radiation was necessary. However, I complained of lower back pain which I suspected was from lugging a 30lb toddler around. She ordered an MRI. Again, I went to the results appointment alone. She walked into the room and said "Oh you are alone." I immediately started crying. The MRI showed widespread bone metastasis. A later bone scan showed there were spots in my ribs, my hip, my entire spine, my entire pelvis. and my sternum. This was New Year's Eve. I was floored by the results. I had no idea I was walking around with that much cancer in me. I had to make an appointment with my oncologist to discuss a new plan. In the meantime, I had my sister reach out to Sloan-Kettering in NYC. I wanted all my ducks in a row. I had heard of a drug PD-L1 that was having great success in clinical trials. My oncologist did not want to do anything to put me at risk of not getting into a trial, so we agreed to hold off on treatment until I met with Dr. Karen Cadoo in NY. I won't bore you with the details of that appointment, but a lot of good came out of it. She told me she was confident treating this as a metastatic breast cancer. She is molecular testing my tumor in hopes of finding some sort of targeted therapy that could work to kill these tumors. She agreed that chemo should be the next course of action to get my liver in check and she was reaching out to her colleagues about clinical trials for after chemo. THe one thing she did stress was that there were many options still to play out. She gave me hope.
Dr. Cadoo and Dr. Cherny spoke at length and agreed that chemo was the way to go. At this point my liver was not cooperating. I had lower right rib pain and was getting nauseous. I had been through ten treatments of radiation on my sacrum and lower spine. Radiation literally and figuratively had kicked my ass. I was in bed for two weeks straight, the nausea was never ending. I had been put on a new hormone therapy that was giving me headaches, but those combined with the nausea caused concern for brain metastasis. So there I sat again with a Hannibal Lector mask over my face listening to the clanging and banging of the MRI machine and praying the whole time that at least my brain was clear. Thank God it was. So now I needed to do a restaging CT of my chest, abdomen and pelvis to see what was causing the pain. Sure enough two spots on my liver had grown and now the bone mets were showing up on the CT scan. Chemo was going to be my choice of poison again.
Both oncologists agreed that I was to start on Taxol. This drug is for metastatic breast cancer. I go in once a week, three weeks in a row, for my infusion. I get the fourth week off to recover. Side effects are not as bad as my last chemo. I could get numbness and tingling in my limbs (which I already got vitamins to combat), nausea, and yup, the hair is gonna shed. But as I told my PA, I would rather be bald and here, than dead and coiffed.
People have asked if I'm upset with this treatment plan. If I'm feeling like its a setback or I'm sick of being sick. Yes, I am so sick of being sick. But I am actually looking forward to this chemo. Why? Because I gave it up to God a month or so ago. I was reading the bone scan results in the still of the night, while my husband slept after we tried to have a night away. Truth be told, I've been very sick for a while now. My radiation oncologist looked me in the eye and asked me if I knew, if I had a feeling when she gave me the MRI results. I told her I did. It's the low-grade fevers at night that are unexplainable. The all of a sudden not having a desire to eat all the things you love. Not wanting to get out of bed, because of a nagging depression, yes, but also because the thought of having to walk downstairs and exert yourself in any way is impossible to fathom. You hear the pitter patter of your son in the morning and his squeals of delight and you just can't do it. You can't make the trek because you just don't have it in you. The staring at your loving husband as he sleeps and whispering that he deserves so much more than this. A wife that can give herself to him, who can take a shower, clean the house, and make him dinner and be an equal partner. All things I can't do these days. My liver is hard to the touch, I have had to lay in a separate bed. He brings me pills, and drinks, and never asks for anything in return. And it's just not fair, because I don't want these to be our memories. I never envisioned myself being this person. I'm such a far cry from the girl he met. It's just not fair.
So as I lay next to him that night, with tears streaming down my face, I told God, that I believed I would fight my way through this. That I was strong, I am strong, and that my husband, my baby, they need me. I said in that moment that I placed it in his hands, because only he knows what my fate is and that I would continue to be the best person, the strongest person, I could be. I believe in miracles and life everlasting. And I believe that I will be healed. I know it will be hard, and I signed up for hard. I will not break, I will come out the other side of this. I didn't bargain, I just said what I needed to say, that I will fight the hard fight because that is my purpose. And with those words, an unexplained calm washed over me, this feeling I have never in my life felt. A feeling of being wrapped in warmth, your tears dried, and your fears subsiding. I knew I was heard.
Walking into battle today, armed with my mother, some smutty magazines, lots of diet soda, and my best chemo swagger, I knew I was taking the first steps in getting the job done. I don't care if I have to be on chemo for years. This is my job now. My job is to live. To show others that miracles do happen, that believing in yourself is the basis of all that is good. So I sat in my chair, put up my feet, answered the nurses questions, and watched as she fanned the alcohol dry on my port. I took my deep breath in as she plunged the needle in and watched my blood collect in the tubes. It was surreal, it was deja vu, it was old hat. But this time, there is less fear of the unknown. I've been down this road before. I know it can work. As she hung each bag of medication, asked me my birthdate and mom made sure I was comfortable (I forgot how much I love a heated blanket!), I watched the drips go through the tubing and into my chest. I just want to feel whole again. To not get winded going up the stairs, to enjoy a meal out with my friends, to put make up on and feel like me. This chemo is allowing me to take back my life. Take back control of my body and to be me again. I just know it is. I'm not living in denial, and if you feel I am, you can take a hike! Negativity has no place here. And I am living in reality. I know that I will never technically be "free" of cancer, but I can live with a chronic disease. I can and I will. So let there be no more tears in the still of the night. Let there only be visualizations of health and wellbeing. Of running through the yard with my growing son, of romantic walks with my husband, and laughter, oh so much laughter, at my sister's wedding. Tears are not necessary. Smile big, laugh til your belly hurts and you can't catch your breath. That is what living this life is about. And when you realize that, then you know that "We got this!"