Mood bouncing like an elevator

It was a beautiful sunny morning yesterday in my part of NJ but all I could feel is that it felt like the storm clouds were racing towards us and darkness was falling as we approach the surgery date, one week from Thursday. My mood is literally bouncing like a bad elevator, shooting up to the happy penthouse one minute, crashing down to the basement the next. One moment I am OK, the next I just want to cry. My wife is somewhat the same as the gravity of her breast cancer diagnosis continues to strangle us.

Sleep is becoming ever more elusive. Waking up at even 4AM and not being able to go back to sleep is becoming more and more common. While I have always been OK with less sleep, my wife has never been and she is feeling more and more exhausted, which worries me. She has been working out at the gym and eating right but she still needs her rest. She goes into the city again this morning for more tests so hopefully she will be able to nap on the bus (unlike much of the country, mass transit, even in the suburbs is pretty decent around here, especially if you are commuting to NYC, Jersey City, Newark etc. We live 1/2 a mile from a NJ Transit commuter bus stop that will get her into the city in a little over an hour, depending on the Lincoln Tunnel). I keep hoping that one of those tests will say "oops, misdiagnosis," especially as I can't even feel her lump anymore (denial isn't just a river in Egypt) but every day I am coming closer and closer to accepting that is not the case.

My wife took her first Xanax a few nights ago. She said it doesn't help much, but that it at least did change her dream channel from chemo nightmare to the more I missed the bus and now I need to walk home bad dreams. She is really tense these days, can't relax at all. It didn't help that she took one of those online life expectancy quizzes the other day that showed right now, before she has even been staged, her life expectancy is down 2.6 years. Nothing I can do can ease her mind and let her take at least a few moments of bliss while she forgets what is on her mind for a moment or two. I haven;t heard her laugh in days, even when the children do something funny. These seems to be no joy now.

I don't like the way I am becoming cross with the children. I was working at my desk the other morning, before the school bus came, when my 7 year old daughter came up behind me. She does this often, tries to get me to play or something, despite the standing rule she is not allowed in my office when I'm working. Usually I either let her watch or nicely chase her out. Sometimes I just tell her to get out, but I at least face her. Not this time. I was doing something a little more intense than usual for early in the morning, looking for the answer to a tough problem when she came up to me. As I growled at her to get out I saw she was smiling, giggling, that mommy had left her tea cup in her room the night before. Before I could stop the words were out and she stormed out of the room, upset. God. Maybe I should be taking the Xanax. When things calm down a bit we definitely need to get a family therapist.

Later, when I took the kids to the corner to wait for the school bus it was sunny and temperatures were in the 60s. The birds were singing, some butterflies were fluttering around. The other children at the bus stop seemed happy -- well as happy as children can be waiting for the bus. And I am miserable. After the bus left, and I had chatted a little bit with one of the neighbors regarding my wife, I walked the dogs back home when they stopped to smell the scenery. While they were seeing what messages were left by the local wildlife I stared off into the sky, thinking how beautiful it was out, listening to the sounds of late spring, smelling the fauna, which is delightful this time of the year, when suddenly I realized I had been standing and staring for several minutes and I wasn't enjoying it one bit.

I am getting to the point where I am hating to go out when the weather is nice. No, let me rephrase it -- I am hating to see people. The other day I decided to work at home not simply because I have a lot of work I want to wrap up before I take off a few days, which I do, but because I just really didn't want to see people. Yesterday morning, I showered, shaved, dressed for work and then didn't go in. Even though most people in my office don't know what is going on, I am finding it grating to see people having friendly, happy conversations with co-workers. Fortunately, the type of work I do can be done anywhere I can connect my laptop to the internet (well not anywhere, I find the sun is too bright on my deck, even with the umbrella up, to see my screen easily).

One of the papers ran a series of pictures from the Shore the other day in one of those "welcome to summer" type stories. Online were the typical series of pictures of pretty late teen and early 20 something women in bikinis at the beach. For the first time since I was 13 or so, I didn't care to look at the pictures. Where normally I could at least admire the women in the pictures (polite way of saying that even though I'm in my mid-40s, there is still a male teenager in me somewhere) all I saw were pictures of happy and healthy women without a care in the world, unlike the woman I love. And I can't stand it. 

I know these feelings are narcissistic, as it all seems to be about me, but I find it much easier to worry and complain about stupid things like this rather than confront the 300 pound gorilla -- that the cancer, because of where it is and the apparent suddenness of it is, is much more aggressive than we realize and beyond Stage I or II. We know there is no point in thinking about all that until after the surgery and the tumor and her lymph nodes have been examined, but we can't help it. And this is bringing us down.

What is worse are the feelings of guilt I feel when someone shares good news and I feel upset, such as when a childhood friend announced on Facebook she is cancer free. She has been fighting for a long time and I am really happy for her, especially as I had another friend who wasn't as fortunate, but when I first read her post I got upset. Misery really does love company.

Basically, aside from reading whatever we can on breast cancer, we are on automatic. We both do our jobs (which, because they both require mental work, can be therapeutic), yet don't ask me what I've done (which has been surprisingly good according to the project leads on this new product that is supposed to transform the way we deliver services to our customers -- I have been a leading contributor from the start, designing standards and procedures, overseeing others work, offering guidance and training, now we see how good I was). Our day lilies are blooming, but so are the weeds in the flower beds we haven't felt like pulling. The house is clean, yet it is a mess. The groceries have been bought, yet we still have a shopping list. I only cleaned the gutters because I realized that plants growing out of them was probably not a good thing. The children still get taken to their after school classes and birthday parties as we try to keep things as normal as possible. This may be all that is keeping us sane at this moment. I realize that sometime soon we will need to speak to a therapist to help all of us through this.

The life expectancy quiz I mentioned earlier is just another nail in my heart that makes me realize that not only may my wife hit the finish line in our journey sooner then I, something I never truly believed would happen as I am a few years older with a history or heart and cancer issues in my family, but that our journey may be much shorter than either of us realize. I guess that is true for all couples, you never know when an accident or  sudden illness will cancel your trip, but you never really believe it will happen to you until one afternoon you get a phone call and realize that is happening. It doesn't help that we have been reading several breast cancer books that explain pretty much everything so my wife can make informed declensions when she talks to her oncologist at the end of the month. Ignorance, while not healthy in this case, really is bliss. I want some serenity now.

Losing our minds

This whole breast cancer thing is really beginning to take a mental toll on us. I am beginning to wonder what is going to happen this summer when my wife is doing chemo and radiation and we are really running ragged. If we are this flaky now, then this summer should be interesting.

Our mood is like the weather these days: periods of sunshine followed by afternoon clouds and storms with a 20% chance of wanting to put my fist through the wall. She filed her FMLA intermittent request forms with her office yesterday while I, after a call with my immediate supervisor and HR, got my ball rolling today. It is amazing how drained I was after I was done speaking with them -- I've been using work to keep me from thinking about my wife and it was hard to focus on her and her disease, even for just a few minutes.

My wife continues to exercise like a mad woman to take out her frustrations. She finds the working out to be very therapeutic. The other evening, she told the karate instructor at her woman's self defense class to not go easy on her because she needed to beat the crap out of something. So far she hasn't broken any machines at the gym and has happily noted that she has lost 4-5 pounds in the last month with all the exercise (she also doesn't have much of an appetite and we generally heat healthy, low calorie meals so she is actually forcing herself to eat some of the junk food lying around her office just so she gets some extra calories). She is starting to worry about losing too much weight but, depending on the treatments, her exercise routine will be sharply curtailed soon and the chemo medication may make her gain weight to boot, so might as well lose as much ahead of time and get as fit as possible.

I have been doing something similar. For the last few weeks I have been transitioning to becoming a home based employee (basically working at home 4-5 days a week in lieu of 3) and have been using my commuting time to spend more time at the gym and, in lieu of walking around campus during my lunch hour, taking the dogs for a nice walk or, when the weather is poor, as it has been for most of the last month, or so it seems, hitting the treadmill for a good sweat. Streaming Dr. Who episodes from Netflix on my iPad is not a horrible way to spend 42 - 46 minutes (well actually 21 to 23 minutes -- I usually split the episodes, half of one on Monday, the other half on Tuesday) and burn off some extra energy so I can concentrate on my work when I head back to the laptop. Unlike my wife, who tends to not eat when stressed, I am the opposite and there is only so much celery, grapes and other fruits and veggies I can eat before my daughter's cheese sticks appear on my radar screen. Fortunately, at least, the extra exercise is combating the extra calories.

But, even with the extra exercise to calm us, this is starting to take a mental toll on both of us. I find my temper, which can be short, especially when the kids are yelling at each other and the dog is barking, getting shorter. Just recently I totally blew up at my daughter's dance school because of something stupid (I was mad at them anyway for lack of emails and communications with us but this time it all came out which actually made me feel worse). I growled at one of the workers at the Y that a few of the TV controllers weren't working properly (there are 10 TVs spread around the ceiling, many of the machines have devices you plug headphones into so you can tune into a specific channel -- that was actually a worthy growl as I was able to explain in detail what was wrong so the maintenance people would know what to look for).

My wife, who has always been foggy (her term), is getting even more forgetful. Last Friday she forgot to pick up our daughter from the karate school (our son has a 2.5 hour session on Fridays) to take her to babysitting at the Y where she can play with other children. That was bad, but I chalked it up to a change in her routine for the day. This morning I found the container of cinnamon my wife sprinkles on our daughter's pancakes in the microwave (no reason it should be there) and she plated my son's toast before putting the toast in the toaster oven, meaning both the plate and bread went in. Good thing I cook dinner.

We don't sleep well anymore, both of us waking up in the middle of the night, unable to easily fall back asleep (unless totally exhausted). Even then, my dreams are haunted. In one dream I threaten to leave my wife because she wouldn't come back from the gym early so I could go (not sure what that means, fear that her health issues will prevent me from maintaining my own health when my family needs me to be strong?). In another I severely punish our son for trying to run into the car while it is moving (pretty sure that stems from the death of my younger brother from car surfing when we were teens). At least I bounce out of bed now when the alarm goes off as I'm usually half awake by then (of course that could also be because daylight is now creeping into the sky at 5AM, which enters our room as the shades are up to let fresh air in, so I'm naturally starting to stir). A vacation we had planned while our floors were being repaired from a leak is cancelled, in part because my wife will be recovering during that week from surgery, also in part that once the breast cancer arose, I stopped getting bids and didn't even get the pets to the vet for their border shots (usually have a neighbor watch the pets, pets have to be out of the house while wood floors are fixed) or make them their reservations.

I still haven't decided whether to be insulted, relieved or amused that so many in our congregation are willing to provide meals for us while my wife recovers on the assumption she does all the cooking. First of all, we've always been a working couple, meaning we end up splitting domestic chores. While she still does more than I (child care) I do all the grocery shopping and cooking. That started back when I was a teenager and my mother's health started to fail. It was either frozen microwave dinners, eat out or cook for yourself. And while I, like most people that age, did take the easy way out and just nuked food, that eventually gets old (and makes you fat) so I learned how to cook. I also learned how to do laundry, though my folding standards never reached my wife's approval (she worked in a GAP during college and still folds to those standards -- maybe we can get a GAP employee in here on laundry day).

I am really getting pissed at the doctors who don't leave messages on my wife's voice mail (she has a job that requires her to leave her cell on buzz or silent so instead of leaving her a message they call my cell so I can email her to call them -- augh!). Seriously, leave a message or, if you reach me, tell me more then we'll call her back. She works full time. You will not reach her at the house, her cell is on buzz and she is rarely at her desk. I can get her by text and email, just leave me a message of who you are, really important with all the different people calling, and a phone number. Saying you are X, without any context such as X from where means nothing. The privacy laws under HIPAA don't mean you have to be so cryptic that you can't tell me that you are X from my wife's breast surgeon's office and are calling about the FMLA letter my wife needs for work. We are under enough stress already, don't add to it.

While it is nice to get support from friends and people in our community, we are getting tired of the looks of pity we are noticing. While it is understandable, and trust me, we both see those same looks in the mirror, it is starting to get to us. We are all over the place emotionally.  One moment we are thrilled that the mother of one of our daughter's friends, who lives a block from the karate school, said our daughter can come over during karate this Friday, while my wife is in the city for a few per-surgery doctors appointments, and then we crash when we think of all the other child care arrangements we have to make (and that is with many people volunteering to help us out). While it is wonderful that we have people who can help us out getting the kids to and from school, we still need to make sure they are mentally prepared to see strangers, or at least people they don't know well, in the house. Not helping is that we won't know until the day before surgery next week when we will need the help. Just adds to the stress, and mine is relatively nothing compared to my wife's. 

Let's face it, I'm not the one facing being cut open, having some of my body extracted, then being poisoned the rest of the summer with chemo and radiation -- and that is if things go well and the cancer is not more aggressive than the doctor thinks and that it has not spread into the skin (tumor is very close). I'm not the one facing a life and death situation and believe me we have had that discussion too. My wife keeps wondering if she did something wrong. Maybe this started back in 2009 when the last birth control pill she took, before deciding on the diaphragm, screwed up her hormones and estrogen levels (this cancer is fed in part by them). Maybe it was something we ate, we only recently got very serious about what we eat. Maybe it is just the luck of the draw. Maybe the Xanax she was prescribed will help her take her mind off all this. At least it is less caloric than the alcohol she can't have anyway (but I can, I had bought her a good bottle of 18 year old Scotch for Mothers' Day -- hey don't judge until you have children -- which, though I am making sure won't reach 19, will probably still be around when the doctors give the ok for drinking again -- I'm not one of those who can down scotch after scotch, 2 drinks in a night is a lot for me and 2 nights in a row is still rare -- an evening cup of tea is more my thing these days and, fortunately, the cool weather we are having now in NJ allows me to have my tea and not have a heat stroke like a big ball of wibbly wobbly... time-y wimey... stuff ... Started well, this sentence. It got away from me, yeah -- maybe I'm the one who needs to talk to somebody).

All I know is that right now, we are tired of the waiting and wondering. We just want to get it over with and move on with the followup treatment and all the "joys" that will bring (at least she won't be the only baldie in the house). However, one problem with going with a good hospital and a good surgeon is that they are very popular and we have to wait our turn. In the mean time we continue to read the breast cancer books to better inform ourselves as to what lies ahead. We have one friend who is a nurse who joked we are the patients doctors fear -- we're analytical and informed, however I am beginning to worry we are becoming over informed which is also starting to affect us. Hopefully we don't lose our minds during the wait.

Should an ill child die over money?

I saw this story last night on one of the websites I frequently visit. The poster's son has been diagnosed with a very rare form of brain cancer. There is only one hospital that can help the boy, Sloan-Kettering, in Manhattan. According to the father they have been doing a study with this treatment for the cancer (Neurocutaneous Melanosis with Leptomeningeal Melanoma), and it has shown a lot of promise. But, because it is a But, because it is a clinical trial, funded by a grant from the National Cancer Institute, insurance won't pay for it; no exceptions, not even in life or death situations.

The boy did qualify for the study in New York but because of the Medicaid/insurance issues he couldn't be transferred there. According to the father, Sloan was excited to have his son come up to the city for treatment, but changed their tune once they found out there were money issues. The treatment will cost $100,000, which the family does not have. So, since they have been denied the medical treatment they need by virtue of a lack of financial resources, they are seeking donations, hoping to get 100,000 to donate $1 each. According to the website they are about a third of the way there. I know I'm not going to miss the $10 I threw into the pot.

I'm not going to rush to judgment on the hospital's reasons, primarily because I haven't seen their side of the story. Also, I'm sure emotion is playing a part in the father's fact pattern. It could very well be the father is grasping at straws to save a doomed child and this is his last hope, whether it is realistic or not. Still, as the parent of two children, and growing up in a family where a child died before adulthood, I could easily put myself in his shoes.

From the various threads I read, this doesn't feel like a scam, it feels like a dad desperate to save his child. I don't know these people, nor do I need to. Their son has a rare form of brain cancer and due to circumstances beyond their control they cannot afford the $100K treatment that their insurance company wont pay for. My wife and I are lucky enough that we could sell our house or take out a loan to cover the cost, and worry about paying the credit card bills and keeping our house later, many are not.

You can argue that the real tragedy here is not the fact that this child is terminally ill, but that we live in a country where we have the resources, the money and the power to prevent such things from happening but choose sit back and count our money like Scrooge instead (which I did - zing). However, this isn't about politics, it's about a dying child. Even if all I did was pay to finance hope, so be it. If you feel like contributing the link is above. And if not, we all know somebody who has cancer or had a relative die of cancer -- maybe you can throw a few bucks at your favorite cancer charity instead.