The Plan, the battle begins.

I'm so random at these postings,so scattered in my thoughts, sometimes not feeling like writing at all. But I think someday I will want to read this, to look back at the journey and remember every detail. Maybe not, if I think back to the first time Mom had cancer, I'd like to forget most of it, except the memories of late night Nintendo playing, random trips to the store for food she was craving, the games she would make for me while I was at school, those things make me smile. It's hard this time, Mom is so far away, 3 hours on a good day. It's a real bummer because I can't just go see here and hang out whenever I want. We can't play Nintendo all night, or go get frozen yogurt for dinner. I have to wonder how is she really doing? Is she ok, is she putting up a front, trying to be strong, when in reality she's sitting there scared to death with nobody to talk to? I hope not, but if I could be there and talk to her, I would feel better. Just to make sure she realizes she doesn't always have to be strong, to know it's OK to break down, to break dishes, scream, whatever it takes to get through the moment.

I suppose I should go back a little to get caught up on current status and what the doctor says. So the results from the scan showed NSCLC, adenocarcinoma in mom's left lung. It's metastasized to her bones. It doesn't look like it is has metastasized anywhere else currently. He believes she has had this cancer for 6 years, which is ridiculous to me. How is that possible? She gets scanned every 6 months because of her previous fight with cancer. I feel like someone fucked up, and personally I'd like to know who! Somebody's mistake is costing my mom her life!!!! So upset about that, but I don't know if it's worth the energy at this point. So it's considered a stage iv lung cancer, incurable, inoperable. Not such a good prognosis, if I were to go off of statistics, a year would be a blessing. I'm not going to go purely off of statistics, I think my mom is stronger than that! The doctor actually is hopeful that she will respond to the chemo plan he is going to put her on, and said maybe 2 to 3 years. Amazing how happy you can be when a doctor says your mom might have 2 to 3 years left! Very ironic,, but we'll take that over 1 year any day! Of course I know in the back of my mind thee is a chance that the cancer wont respond to the treatment, but I also know that the new target drugs might be able to help at that point. I have hope, and I will hold on to it and try to give it to mom as well. She will finish the radiation on her arm, then start chemo. Today she has a chemo class at 3 to discuss her first treatment. She had a port put in on Tuesday, and apparently it went fine.

The arm is a whole new story, I'll have to post about that in the next blog. It's time to go home, work is getting a little easier to focus on. Work still seems to go slow, but I'm actually getting things done. Life is taking on a more normal pace in the face of cancer. It's amazing how you just want the world to stop for you, but it trudges on and drags you with it.

Waiting, Processing, Numbing

Time seems to move in super slow motion, minutes taking days to complete. How many times can I look at the time and wonder when it will be a time I actually want to see? Sitting at work, trying to work, I'm not successful at it, but I try. Mom still sits in the hospital, and I wish she could go home. It's such a sad place, not good for the soul. I was trying to think, where did I leave off and these random postings? It was the first wait, the test that we thought would answer all the questions, set things straight, put medicine in motion so to speak. Yeah, right...... things didn't work out that way.

But I did call my mom, I usually call early in the morning because her cancer doctor comes in very early to see her. Mom answered the phone crying, not easy to hear, but I maintain a very calm demanor and asking her what's wrong. She tells me the doctor was in and he didn't have good news, which we all knew, but mom was clinging to false hopes. Who can blame her, even I would love a miracle here... Hello God? Are you there, it's me Holly! Yeah, the man upstairs doesn't hear, and I'm use to that. So she tells me that the test was positive on her shoulder, and she has Adenocarcinoma. The sad part is, that type is cancer is found usually in the fluid or tissue that surrounds your organs, not in the bone. What it means for mom is that it has spread from somewhere else in her body. The tumor in her arm is secondary, there is cancer somewhere else, festering. I swear in my mind it has this evil face, and it laughs while my mom suffers, and I want to just rip it out of her and beat the shit out of it. Cancer becomes something more than a disease, it's like a personal war against someone you love and you try so hard to figure out a way to fight it, all the time building up a hatred against it. Mom is so upset, saying she had hoped the shoulder problem had something to do with cortisone shots, that last bit of hope gone, trying to come to grips with having cancer again. I know she is scared, I know she is really worried about chemo, I know there is noting I can say to make it any better. But of course I try, telling her not to jump to conclusions and that she can fight this again, she's done it before. We talk for a while and I hang up when I feel she's somewhat comforted, which really she isn't, but maybe has gotten some comfort from talking about it.

I call my sister and break down, I couldn't do that with my mom, for her I need to put my best face forward, for her I will fight, but thankfully sisters allow each other to crumble, then pick them up and shake them off. I tell her the news and tell her to call my other sisters, I called my mom's husband so he could get to the hospital and be with my mom. I don't really manage to work that day, but I manage to read more information on the type of information than I really need. There is some hope at that point, it could be in her thyroid system, that would be the the most treatable! It's hopeful, even if the lungs and colon are the most common area for that type of cancer. I'm more of the practical, matter of fact, cut the bullshit type of person though, and I know the battle ahead is not going to be the easy one. I'm not sure, it's just a feeling, and I dread it.

We went to see mom the next day, another Saturday hanging out at the hospital. It's actually not bad, because everything is better when we are all together. Mom is in pretty good spirits. I forgot to mention, the day before they took her for a CT scan with the iodine dye. I'm not sure if it's a full body scan or just her chest and abdomen, but they need to find where the cancer is coming from. Of course there were no results while we were there, that would have been the best case scenario. So the weekend comes and goes with no news.

Monday morning I call mom, and again she is crying. I hate when my mom cries, i feel so damn helpless. This time it is because she went to radiology today to get marked for her first radiation treatment for her arm. Apparently for radiation you have to get the exact site measured and basically tattooed so the radiologist knows exactly where to zap you. The idiot radiologist told mom two things, one she had a tumor in her left lung, about 2 inches by 2 inches, and the second thing was that when she had her hip surgery 2 months prior, the did a biopsy of it. It came back positive for non-Hodgkin lymphoma. What the hell? Is he serious? I'm trying to remain calm, trying to tell mom not to jump to conclusions, after all, maybe he didn't know what the hell he was talking about, he was not the oncologist doctor. I'm trying to console her, while trying to maintain my own fear and anger at the same time. We hang up and I immediately call mom's oncologist office. They put a message in to her doctor and I will get a call back. I'm texting my sisters with what very little info. I have to give them while I'm on the phone. I seriously have to question the idiot that would divulge this type of information without knowing what the patient may or may not already know about their condition. Seriously, how stupid is that? So mom sits in her room trying to make sense of it, and probably thinking the worst. Probably thinking the same thoughts as me, except it's actually happening to her. It's awful! I do what i always do, I start researching lung cancer related to adenocarcinoma, and it's a pretty bleak picture. I'm emotionally unavailable, for anything, anyone, I just want to shut the world out. So selfish, but I'm not sure what the correct coping is going to be just yet. Hell, part of me wishes I could just go drink myself silly, but my stomach is so upset already I can't even imagine drinking right now. But something to make my brain quit thinking so much, something to just make it all stop. I don't know what to do for mom, i don't know how to make it better, to somehow find some form of hope, a ray of light, I just don't have it, and that sucks. Whatever issues I've had with my mom, this sorta puts them into perspective, because no matter what, nobody wants to see their parents hurt and suffering. But I don't think there will be much I can do during this battle but be there I guess. I called the oncologist again that afternoon and was told the doctor said he does not have the full report, but will probably be going over it with my mom tomorrow. Which is today, and so I wait. I actually don't want to call today. Today I don't want to hear my mom cry. So I wait, and soon I will suck it up and call mom.

The Wait

I can’t work! I’ve tried, but it never lasts more than 15 minutes before my mind is wandering back to my mom. Life feels so chaotic, so frustrating, so unfair, so fucked up. I guess I have to recap a little, actually a lot. What the hell, I can’t seem to focus on work anyway. Let’s go back 20 years…….. Mom is on her way to the hospital, severe stomach pain. That’s weird, I wonder what’s going on with her, at the time I’m 17 and living with her and my step dad. I’ll summarize the agony of those days quickly; Mom has non Hodgkin’s lymphoma. When they told us the news, I can only recall how numb I felt, how disconnected. My mom had cancer? It took me back to my mom’s best friend, earlier in life, Judy Magrin. I loved her; she was so damn nice and had a fire about her that drew people in. Anyway, Judy died of breast cancer, and I recall slightly blurred memories of the painful fight. It seemed like we lived at Judy’s house, my mom always trying to make Judy comfortable, while we kids played outside or went to the nearby park. I remember the really, more than anything else, Judy was suffering. It just seemed like I remembered her in her room, in her bed, so sick, and in pain, but it was like we weren’t really suppose to see her. It was sad, and the memorial after her funeral seemed so heavy. Her daughter, Jayne, who had a slight mental disability, seemed so lost, so alone. I guess the thing I remember most is how sad Jayne was, almost as if her spirit had left with her mom. It sucked, and I was very young, too young to know how to make Jayne feel better. But I imagine nobody could have made Jayne feel better in that moment.

So hearing my mom had cancer, it didn’t exactly bring me to a happy face. It’s the dreaded word, the death sentence, the disease that takes so many that are not ready to go and it was living in my mom’s body. Those were hard times, and I don’t really remember my sisters being around much, not sure why. I think we weren’t as close then as we have become now. What I do remember are a lot of late nights, of my mom having radiation treatments, going through chemo, being really sick, and being in a hospital bed looking like she would die with any given breath. I was the only one living with her then, and I do have some good memories amongst the bad: like when she decided she finally had a desire to eat and wanted a deli sandwich. Off we went to the deli, we get out of the car and walk towards the deli, but wait, where is mom? I turn around to see mom standing in the parking lot, her legs steaming, with a bizarre look on her face, she had just peed her pants. For whatever reason, the drugs, the chemo, she had no control over that moment, but man did we laugh about that one! To this day it brings a smile to my face, I know that’s strange, but cancer does strange things to you. We also became Nintendo junkies together. Bob hated when we played Nintendo and he was trying to watch tv, so we would always pretend like we were going to bed around 9:30-10, and shortly after Bob would go to bed. Mom and I would emerge out of our rooms shortly after and play Nintendo, sometimes for hours; forget the fact that I had school the next day. It was so much fun to play those games together, and sometimes while I was t school mom would beat some big boss and be so excited to tell me when I got home! But I’ll never forget the pain in mom’s eyes, the puking all the time, her never wanting to eat, and me feeling completely incapable. Mom beat the cancer, and we were all relieved after she made it to her 5 year remission point!

Fast forward roughly 18 years, mom has had a high white blood cell count for over a year if not more. They’ve finally diagnosed her with chronic leukemia, and the cancer word is back again. It’s not so difficult though, as the doctors have said it’s the manageable kind and she will probably live a normal life with medication. Seems hard to believe, but I’ll take the god news for what it’s worth. She certainly doesn’t seem sick, so maybe everything is ok.

Fast forward to a week ago, mom is having severe pain in her shoulder and goes to the ER. Actually her shoulder has been hurting her for 2 months now, but it’s become worse. She actually had hip replacement surgery about 2 months ago, and she though the shoulder pain was from using a walker. Anyway, they do an x-ray, and the ER calls the oncologist for a consult. There is a mass inside her humerus bone, and her humerus is fractured where the mass is coming out from inside the bone. The oncologist basically says she has bone cancer in her arm and it’s fractured her arm. I get the call and I’m so mad I can hardly think. So mad that my laptop goes flying across the room in the brief temper tantrum I have. My mom has been through a lot medically, more surgeries then I can remember, and enough pain to last 5 lifetimes. The world suddenly seems so fucked up and unfair, I want a meeting with god, because I’m ready to tell him to fuck off. At this point in my life I’m not even sure there is a god, but if there is, we are going to have problems when I die. Anger really is the first thing that grips me, why does my mom have to deal with this again? If people have to battle cancer, let them battle it once and be forever victorious! I hate the way people have to suffer in this world; it sits with me and bothers me when nobody even knows what I’m thinking. It’s why I have such a hard time with religion, I don’t believe suffering should be so wide spread, and often more extreme for some. Like losing a child, what god takes a child from their parent? I’ve seen that pain, and it’s hard for me to comprehend how those people can even go on with their own life. I feel for them, yet often have no clue what to say to make things better. As if anything could ever make that better, one of the worst pains I could ever imagine. So I got mad, I cried, I blasted the radio and tried to think of what to say to my mom, who I needed to call. I eventually made the call, and my mom was actually taking it very well. Better than me, I got off the phone and went to the store for a pack of cigarettes, even though I don’t smoke anymore.

That was on Tuesday I think, and the following Monday my mom called 911 because she was in severe pain, at least that is what 911 said. My sister calls me and tells me, and I throw on some clothes and make the 3 hour drive to where my mom lives. My sister had told me she wasn’t sure what was going on, but they thought mom had a stroke as she was very incoherent. Initially not remembering her name, calling 911, not knowing why she was in the hospital, etc. I’m freaked out, driving as fast as possible, and wondering if my mom will know me when I get there. I think we all had the same worry, but she knew us when we got there. Three of my four sisters showed up, I made it there last. I’m thankful that over the years and though my mom’s illnesses we have all become very close as a family. I visit with mom, who is in fairly good sprits; even if she can’t remember that I just came up Saturday to go get a pedicure with her. The doctors are doing a lot of test to determine what is going on with her brain, but nothing is showing up. The CT scan was normal with the exception of an enlarged live bile duct. They did the bone marrow biopsy Monday instead of Tuesday, and that went fine. They told us they would know the results and what type of cancer she has in 2 to 3 days. Today is Thursday, and I can’t think straight. My phone is next to me, and I’m waiting for it to ring, and yet dreading the call. I called the doctor yesterday because I couldn’t stand the pain of waiting, but of course the results weren’t in yet. She also had an EEG to monitor her brain waves yesterday, to make sure it wasn’t a stroke I think. No results from that yet either. Today they are doing a tube down her throat, I believe to check her stomach, as she has had a pain in her stomach since Monday. Waiting for all the results is killing me. I haven’t eaten much this week, I feel nauseous all the time, I can’t sleep because my brain wont shut down, and I’ve done more research on bone cancer than one person should probably ever do! I’ve read some horrible stories and some happy ones. Tried to dissect medical records and doctor reports, looked at x-rays, CT scans, lab reports, you name it, I’ve looked it up. But it all comes back to the same thing, sit tight and wait. We don’t really know what we’re up against until the results are in…….. so for now I attempt to work and wait.

Test run

I've never considered myself a blogger, yet lately I find the need to just write. This seems to be a good outlet for now.