I really, really, really can’t stand Ron. Can’t STAND him. I hate the way he makes me feel when he talks to me. Like I’m stupid, and ineffectual, and just utterly incompetent. He says something and when I respond, he twists and writhes until what he originally said isn’t really what he said at all, and I just heard it wrong. So ultimately, I am always stupid and he is always right. I can feel myself backpedaling and trying to figure out what to say that will be the right thing, and the end result is me fumbling through an incoherent sentence and he zings me anyway. And I hate the tone that he uses to talk to me – I am perfectly capable of hearing and understanding without him raising his voice and giving me that “I’m TRYING to be patient here” attitude. I cannot wait, CANNOT WAIT until Sept. I am gone. Out of here. Kaput. And I cannot wait.
I’m having my first mammogram today at 4pm. I just told Ron, which is a little weird, but he seems to have no boundaries when it comes to that sort of topic, so whatever. I’m kinda dreading it because it’s going to hurt, but I’m so glad that I’m getting it out of the way. It’ll be good to have a baseline over a period of time. And I don’t have fear that it’s going to show something… Dr. Hearn really helped put my mind at ease during my visit with him a few weeks ago. It’s been nice to let go of that worry and obsession a little – I still think about it, but now I have doctor-approved facts to throw back at the voice in my head.
I had a really, really good weekend – I can’t even pin down why it felt so nice, but for some reason, it felt long to me. Friday was Jennifer’s b-day, so Grandma & Grandpa B came down on Thursday. It was so nice having them here – not only because I enjoy seeing them, and Grandma’s cooking is divine, but also because it was really nice to not worry about Mama for a day or so. Knowing that G-ma was there put my mind at ease – I didn’t feel responsible for making sure that everything was ok with Mama because I knew that Grandma was taking care of it.
On Friday, we went over for dinner and presents – I felt very uninspired this year on Jennifer’s gift. I didn’t want to get her the usual clothes or pocketbooks – there’s just too much going right now that makes those gifts inappropriate. So I got her an hour massage – it’s frivolous, not something that she and Tom would budget for right now, but will hopefully make her feel better, if only for a hour or so.
Then Sat, Bobby and I got up at what felt like the butt-crack of dawn to do the Wedding Festival…. And it was so strange because we both actually really enjoyed it. For some reason that I can’t quite pin down, I felt excited rather than overwhelmed by the show. Maybe it’s because we’re in the mode of knocking debt out, so every girl that walked by was a potential dollar sign. Or maybe it was that we established before it even started that each vendor there had either a part-time attitude or a full-time attitude… and that we’re part-time and that’s ok. With everything we have going on, there’s no point in pressuring ourselves to fill up every weekend of 2007 – if we do one or two weddings a month, that’s enough. And we really only needed one to pay for the festival itself, and two to make at least a little money – and we ended up booking three!
And one thing’s for sure – watching Jennifer’s pregnancy experience has not been exactly a positive thing for me. Obviously I still want to get pregnant in the next little while, but lord, I hope she’s not a fore-shadowing of things to come, because her experience has truly sucked. She’s now entering week 13 – the second trimester… that’s crazy!! – so all the books are saying that things are supposed to get better now. We’ll see.
Buddy just called me from Jake.. oh, I miss him!! He made me laugh so much – and he really, truly misses me I think, which is a good feeling. Boo, sometimes I really, really, really miss Jake.
I’m regressing. It’s directly related to Mama’s condition. When Mama is ok (or at least seems ok), then I’m able to actively participate and contribute in a way that is a fair representation of my capabilities. When Mama isn’t ok, I can’t focus worth a damn.
Today is her 6th chemo treatment – today, starting at 10am and continuing for approx 5 hours, she’s going to be injected with Taxol, Avastin, Arridia (calcium), steroids, and Benedryl. The CT scan done two weeks ago showed that there are no changes in her liver. None. Zero. Zip. Five treatments of some of the most toxic substances invented by man, and the spots are the exact same size that they were in Nov, down to the f-ing centimeter. And the lump on her head is growing. It’s the biggest it’s ever been – the size of an egg. It can no longer be disguised by her thinning hair. She looks terrible… she’s dropping weight (which under normal circumstances would be a good thing, but this is so not normal), she’s pasty, her hair is so sadly thin, her teeth have turned yellow from the chemo, and the lump on her head keeps growing and growing.
And the most upsetting thing of all is the look in her eyes… she’s losing hope. She looks like a terrified little girl. I don’t know what to do. I don’t know how to make it better. I don’t know how to fix this… any of it. I’m coming to the realization that Mama may very well die of breast cancer. Not today, not tomorrow, but before her time.
But that’s an interesting phrase… “dying before your time.” If you believe that God has a plan for all of us, and that’s it’s predestined before the foundation of the world, then it’s impossible to die before your time. Your time is your time – you die when the number of days that was allotted to you is up. So if this theory is true (and this is the most comforting theory for me right now, and so it’s the one I’m going with), then Mama’s date is already marked on God’s calendar, along with Daddy’s, mine, Bobby’s and even Baby H’s.
It’s just so much easier said than accepted… the words are easy to form, but the actual realization that Mama (and Daddy and me and Bobby and Baby H) is going to die is hard to understand, much less be ok with. The ladies on my message board have found a way to detach themselves – at least, that’s the face that they write with. They look at their treatments as they would someone else’s… like they are discussing someone else. When I first found the message board, it was comforting because they’re so ALIVE – and anybody who’s that alive can’t be dying. But over the last few months, as I’ve seen more people come to the board because they’ve just become members of the most horrible club in the world, and a few have left (permanently), I realize that if I stay long enough, some of the people that I’ve chatted with will die. They will leave – they will be gone. The cancer is going to get them. And I can see the fear in their words… not all the words, but occasionally, when they’re not being witty and amusing, I can sense a tinge, a layer of fear under the surface. They know it’s coming. They’re finding acceptance of their fate through words, through sharing their thoughts, and treatment stories and pictures of their children. But even though they are using their words, and my mama’s not, they’re all on the same path.
I can’t think about Mama dying, yet I can’t not think about it. It’s with me every day – I go through a day, a week, even two weeks, of feeling normal, but it’s always there – if not on the front burner, then simmering on the back with the smug assuredness that it’s time at the front will come again, and again, and again. This is the new normal.
And I’m not feeling all happy and accepting and chipper about it today like I was yesterday – today I’m feeling scared and upset. Not even angry anymore – it sucks, but that’s the way life is. I can’t think about my children not knowing my mama. But I can’t not think about her leaving. I know that breast cancer kills. But I’ve started finding comfort, small comfort but comfort nonetheless, in knowing that it doesn’t kill instantly.
Tom told us this weekend about the father of one of his baseball friends that just died of cancer – he was buried in his camo pants because that’s what he asked for. He had time to plan his funeral, to prepare himself, to choose his favorite pants. Tom said that his widow was surprisingly composed – that she was dabbing tears, but not really, truly crying. But why should she? She’s been crying for months and years – she’s been preparing for that day since the day that the oncologist said the word “cancer.”
And in a lapse of judgment, I asked Mama, Jennifer and Tom which they think is better – the long, slow, eventual but inevitable death of cancer, or the sudden, split-second death of a car wreck. And no one answered except Jennifer, because she still doesn’t realize that Mama might die – she said car wreck because the other is too hard on the family. Wrong answer. If I had to say goodbye to my mother (and indeed, it appears that I may at some point), I want to be able to say goodbye. I want to have the hope that not only will she be here when my children are born, but she’ll also be here into their memory-forming years. That they will clearly remember their grandmother. And there’s even the small, but still flickering hope that she’ll see them become adults – when they get their licenses, go to their proms, go to colleges, pierce their noses and eyebrows, and that she one day will dance at their weddings. With a car wreck, it’s gone in a second – all the hope and pictures of “one day” are dissolved in a single second.
So yes, I prefer the illness. I never thought I would, but I do. I prefer the opportunity to say goodbye. I prefer the knowledge that we need to take advantage of each small time, even though with that knowledge comes the dread of the future, and the guilt each time I stay home to balance the checkbook and mop the kitchen instead of going to have dinner with my mother. I imagine what the car wreck would be like – we would be normal family, who went shopping and went off birth control and had snippy little fights without a thought of the future implications… But the time without cancer – from May 2005 to Nov 2006 – taught me that even when you have a lesson, you forget. During that 1 year and 7 months of blissful ignorance that it was running through her bloodstream, and our lives were once again going to be forever altered, we dropped back into our routines. Our nasty, ungrateful routines – the kind that you have when cancer has never been an issue. We forgot. I don’t know how, but we did. I think it’s safe to say that we’ll never forget again.
I want to talk to Dr. O’Rourke about some stuff… he’s out of town today, so Daddy and Mama are going to be meeting with Hunter. I have mixed feelings about this – I’m starting to feel like every time we talk to someone other than O’Rourke, we take the chance on having our information corrupted. In my opinion, it’s better to filter all your info through the SAME filter…. We’ve established a baseline with O’Rourke, and talking to other oncologists, technicians, etc has done more harm than good. He may be a hope-crushing-pagan, but it’s better than having a flighty, falsely positive onc with misplaced optimism.
I need to do research and email O”Rourke about the following:
– Xeloda – oral chemo. Would this be an option for the “maintenance chemo” that O’Rourke has mentioned?
– Gemzar – usually used with Paclitaxel (another member of the taxine family?), IV chemo
– Carboplatin (commonly used in conjunction with Avastin) – IV chemo
– Radiofrequency Ablation – internal radiation; usually used for primary liver cancer and metasized colon cancer. Most effective on small tumors (2 inches or less). Usually not an option is there is active cancer outside the liver (would the two small spinal mets rule her out?).
Daddy keeps talking about the lump on Mama’s head “turning around and going into her brain.” I could be very, very wrong, but I don’t think that’s how breast cancer usually works. Usually, the cancer follows the path of liver, bones, lungs, brain. The head isn’t involved at all, which makes it unlikely (I think, I hope) that the lump on her head would cause her cancer to skip directly to the brain… that’s usually the last place it goes (and it’s good that it goes there last, because your days are very numbered after brain mets appear). But then again, Mama’s head met is completely unusual – she has proven again and again to be an exception to the rules. So maybe Daddy’s freak-out is well-founded.
I’ve been looking forward to lunch all day… I just want to escape and go fixate by myself. And Belinda just emailed me asking if I have plans. I don’t want to go with her – I like her, but I’m really feeling internalized right now. But I know that going with her is probably the best thing that I can do. Go to lunch with a normal person like a normal person, and then come back this afternoon and work on my job instead of fixating on cancer. I HATE CANCER. I hate it, I hate it, I hate it. Ok, I need to go to lunch with her… it’s time to put on my normal face again.
Just sent an email to Jennifer – it belongs here, so here it is:
Hi – so are you having a lovely Monday? I’m having a hard time focusing, as usual. And I just got an email from Tom apologizing for being “rude” on Saturday…. I wrote him back and told him that I didn’t think he was rude and I was sorry for ambushing him. I think that he and I are a lot alike in that we fixate on stuff – we just happened to be fixating on two different things Sat morning… just think, now you have TWO anal people in your life (heehee) :)
So I’m having a thought, and usually I type it into my little work journal, but I wanted to email it to you instead… Prepare yourself for some unsolicited advice, but it’s kinda directed at myself as well….
I know you’re probably not, but I’m really excited about getting all your junk consolidated into the storage room this week. I think you might be surprised by how much better you’ll feel once the nursery is cleaned out – it’ll officially transition from “the room that houses all our random crap” to “oh, my gosh, our baby is going to sleep here” – a blank slate for it’s new little occupant. Also, call me stupid, but I think that you should go ahead and order your new bed this week – it sounds crazy, but it’ll make you feel like more of a grown-up to wake up in a grown-up bed.
I know you don’t love the apt, but it’s a home if you make it a home…. if you totally disengage, it just becomes the seventies-infested craphole that it was before you moved in. You and I were talking about positive energy this morning in relation to Mama.. but I think that we need it for ourselves as well. We’ve all had a series of really, truly traumatizing, life-changing events occur during the last few months – you and Tom got married, Bobby and I uprooted ourselves, Chad died, Mama was rediagnosed, Tom’s house has become the never-ending story, and Baby H appeared on the scene (aka. in your uterus)…. Yep, we have all been really sad, really depressed, really nasty, and really good candidates for anti-depressants… but the bottom line is that WE’RE ALL GOING TO MAKE IT. Really, we are.
What was normal a few months ago is gone forever. But our “new normal” is right around the corner. We can’t just believe for Denise anymore… we have believe for us all.
Ok, that’s all I have to say. I know you’re busy shaping the future of America one kid at a time, so don’t write back. I just had a thought, and wanted to write it down.
I love you… You’re the best friend, sister and neighbor that I could ever have… It kinda feels like life has been crapping on us – but there’s no one else that I’d rather get crapped on with! (I doubt they make a Hallmark card for that :)
Whew, a lot has happened. Can’t go into all details, so will summarize.
My doctor appt with Hearn the OBGYN went fine. I really, really, REALLY like him – will willingly entrust the birth of my eventual baby to him. He just patted me on the shoulder and handed me tissue as I cried about breast cancer, then explained to me that there’s an appropriate amount of concern (which is defined as self-breast exams, and calling the doctor if you find something, and regular check-ups and mammograms) and an inappropriate amount of concern (which is defined as fear that drives your life and is lurking in every waking thought and is waiting on you when you finally fall asleep every night) and I am firmly in the category of INAPPROPRIATE. He explained that genetics actually play less of role than I thought because we’ve only had one occurrence in our family, and that age is actually a much, much larger factor in breast cancer than genetics. After talking to a radiologist, he agreed to write an order a mammogram even though he thinks it’s a waste of time until I’m 35 or so – but it’s worth the peace of mind that it’ll bring. Gave me a lesson on the correct way to perform a self-breast exam. Talked about getting pregnant, the emotions and stresses surrounding that, and how to balance the desire to get pregnant with the need to stay balanced. Oh, it was an excellent visit.
The lump on Mama’s head continues to get bigger. It freaks me out, but I feel helpless. I’m scared that it’s cancer, but the logical, rational voice in my head tells me that the reason that they don’t seem worried about the lump is because it’s not life-threatening… it’s a symptom of the life-threatening problem, which is cancer in the liver. If breast cancer takes her life, it will be through her organs – her liver, her lungs, her brain. It won’t be the lump on her head. Somehow, though, I don’t find any comfort in that thought, no matter how true it may be.
Jennifer’s first appt was last Monday, the 12th. Hearn was wonderful once again – put her mind at rest about how it’s ok to not be completely excited about the baby at this point, and also gave her a prescription for Zoloft that I sure as hell hope kicks in soon. She got excited about the baby for the first time on Monday – she had an ultrasound, and we saw it move for the first time. It rolled over and squirmed like a little critter… it was truly amazing. She got sick again on Wednesday (happy valentine’s day to Tom) and had to go to the ER again to get fluids. Was diagnosed with a urinary tract infection. I don’t know…. None of my friends have had this many issues during their pregnancies.
Monday was kind of a tough day. Seeing the baby on that screen, I felt the tears just coming… and Tom kept telling everybody “it’s the first grandbaby, it’s the first grandbaby.” And it is… I just wish it were mine. It’s such a displaced feeling not being first. But that logical, rational voice (it has a lot to say these days) says that of all the stuff that I could go second on, this would probably be one of the best… I’m getting to experience the whole thing second-hand, and honestly, Bobby and I can’t even handle ourselves a good bit of the time as it is… throwing a pregnancy in the mix would probably not be the best idea.
And I’ve had a breakthrough with Ron in the last two weeks. I think he likes me after all. Today, he called me into his office to tell me that I’m now the “gatekeeper” of all displaced invoices and said “is that ok?” And of course I nodded because, honestly, I don’t care. And he said “it’s just so good to have you here” I looked at him and said “you actually sound like you mean that” and he said “of course I mean it, I wouldn’t say it if I didn’t.” so I smiled and thanked him for the warm and fuzzy moment and he laughed and said “ya know I love ya” as I left his office. So I’m thinking that of course it’s going to pass and we’ll probably hate each other again next week, but on a scale from 1 to 10 (1 being where we started, 10 being I’m his favorite), I think I just passed the half-way mark. So yay for me.
And about Bobby. He started with Champion Communications this week. Makes me nervous as hell, but he’s thrilled so I’m trying to control my eye twitch. He’s part-time, moved his equipment up to the office this week. He is free to do free-lance work as long as he only bills them for their clients’ stuff. I’m wondering how all of this is going to affect Rettew Wedding Productions… he’s saying that he can’t work on weddings during the day, and that he’ll have to do them at night… which I think means that he’s not going to be doing a lot of weddings this year. He has said since the beginning that weddings were not his ultimate goal, that the equipment would get him so much more than that. So maybe this is where we phase ourselves out? We have a wedding festival next weekend – I’m dreading it like the plaque, but I know that the more money that that equipment can make for us, the closer we are to paying it off. So it’s back to weddings we go. But I really am thinking about bailing out on some of them this year. This wedding business is his baby – it’s what he wanted, it’s what he put us $25000 more in debt for. I don’t think it’ll hurt him to do some by himself…. I have a feeling that that’ll go over like a lead balloon.
And Michele bought a truly, truly gorgeous house this week…. I’m so happy for her, and (kinda ashamed to say it, but here goes) so jealous. I so, so want a house… I’m so, so sick of that apartment. But I keep telling myself that we’re doing the right thing by scaling back. That eventually (fingers crossed) maybe I’ll be able to have a house as beautiful as hers. But I’m pretty sure that we’ll never be on a golf course… pretty dang sure that they would kick us right out the first time we had one of our classic SarahBobby brawls. Bobby and I are spastic and unsettled and (as I told Bobby the other day) one step up from a coupla hobos. We’re going to continue to live in our seventies-infested apartment until we pay off our freakin debt, or make SOME kind of progress. Then and only then will we buy a non-golf course house. Things are not normal for us. Why should we live on a golf course like one of those normal golf course people who will continually show us how un-normal we are?
I really, truly am so happy for Michele. I remember when I first met her… I thought that she couldn’t be real – that no one could possibly be that nice. But she is. She’s truly, truly the most caring, thoughtful person I’ve ever met. No one deserves a beautiful, perfect, golf-course house more than sweet Michele!
Argh – I realized lately that April 15th is only two months away… I’m terrified of what the IRS is going to want this year. It’s our first year of Rettew Weddings, and I have a sneaky feeling that we might owe every dollar we’ve saved. But if we owe a ton of money, we’ll figure out a way to pay a ton of money. And then we’ll readjust, and start all over again. We are rocking it out with the credit card and business debt… WOW. That’s truly, horribly impressive. And that’s not even counting our student loans or car.
Wow, last week was, without a doubt, one of the worst that I’ve had here at S-D. Truly, truly horrific. I single-handedly screwed up the standard costs, and everything I touched turned to crap… Meanwhile, I worked over 60 hours, and still managed to get blasted in a team meeting on Friday. Ron was gunning for all of us when he walked in … and I knew it was coming. I dreamed about the standards on night, cried myself to sleep another night, and was actually physically ill on Friday before the meeting. I sat in the meeting and looked and Ron and really, completely despised him. Wanted him to be in pain, or maybe even die. With complete hatred. Isn’t that healthy.
And today he calls me into his office and I’ve screwed up the monthly report yet again. It apparently is a physical impossibility for me to get it right the first time. And maybe the second time as well. And some of the mistakes are just screw-ups… and some of them are nothing I would have known. Ron’s rules and expectations are a moving target. Maybe I’ll hit them one day, but I feel like it’ll be a complete accident.
It’s now February, and I think I can officially say that 2007 is off to a really, really bad start. Mama has metastatic breast cancer, and Thursday’s CT scan showed that the spots on the liver are still there. Jennifer is pregnant and depressed – is completely truthful when she says that she wishes she could give her pregnancy away to someone who actually wants to be pregnant. Bobby is unemployed and an emotional roller-coaster… he gets free-lance work and feels productive, then hits a bad couple of days where he slops around the apt (which is depressing enough by itself) and doesn’t take showers, and feels like a failure. Daddy is bitter and mean and hates life – when I asked Saturday why nobody had filled me in about the CT scan, he said “maybe if you called out here once in a while, you would know” and then covered his mouth like it just slipped out.. yeah right… he wanted to be mean, he was mean, and he felt an extreme satisfaction when he left the house because I was crying and upset. Marlena and Tim just got an email saying that it’s going to be 3 more months before Emma comes home. Marlena’s barely holding it together… she hates, hates, hates her job, and has to force herself to get up in the morning.
And then there’s me… I have a job that I can’t stay on top of, family and friends that feel neglected because I spent last week working 60+ hours instead of paying attention to them, and a husband that’s an emotional wreck because his structure and routine are non-existent. We’re cooking dinner for Tim and Marlena tonight, dinner for Mama and Daddy Wednesday night, cleaning Jennifer and Tom’s apartment Thursday night… oh, and did I mention that my job will spiral out of control if I don’t give it the most attention? I am overwhelmed. I want to crawl in a hole and hide from everything and everybody. I have to go to Marlena and Tim’s tonight and apologize for talking to Shawna about Jennifer not wanting to be pregnant in front of Marlena…
I’m tired. I’m tired of making an effort. I don’t want to call and chat with people. I don’t want to get dressed in the morning. I don’t want to work. I just want to sleep for a thousand years and maybe this will all be over when I wake up.
And I have an obsession about the breast cancer message board. I can’t stop reading it, even though it upsets me and makes me depressed. There’s a 30-year-old that found out she has liver mets last week. I prayed for her on my way to work that her biopsy would be negative. And it wasn’t. That evil, crushing, life-sucking disease is taking another one… someone who’s my age, who just had a baby, and who shouldn’t have to worry about whether she’s going to see her little girl go up. I want to be in denial. I want to live my life like I’m a normal girl, from a normal family, with a normal mom who doesn’t have a death sentence hanging over her head. I’m ready for things to just stop. Just stop and breathe. 2007 has to get better. Please God, it has to.
Ok, I wrote an email to Ron that I would like to use my floater day next Monday… I haven’t sent it but I’m going to before the end of the day. After I rework the damn monthly report, and prove to him that I’m not a complete idiot.
And the pregnancy thing. Lord. I don’t even know if now’s the time. I’m not going back on the pill, but I don’t even think about it that much anymore. And if/when it happens, I’ll be happy. And if it doesn’t, I’m going to give it 6 months, and then ask for help. My doctor’s appt is next Friday, the 9th… I think it’ll be good to just get the green light that everything’s ok, and that it’s ok to try. And I have a feeling of dread about the breast exam part, but I do self-exams all the time… several times a week. I have to believe that I would have found something if there were something there. And I’m going to insist that they start letting me have mammograms. I don’t care if they think it’s too soon, and I’m too young… I’m going to push for it because it’ll just make me feel better. Safer. Even though I know that there’s nothing I can do to keep the breast cancer away.