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!