So how is your day going?

I hate winter. Not so much for the cold and snow (if we ever get it again here in central NJ -- my kids haven't been sledding in two years), but the darkness. Long ago I realized I am one of those people who get affected by the change in seasons and I can usually deal with it with bright lights and exercise.  But the last few days have been rough.

15 years ago my company was bought by a larger company. Yesterday the powers that be announced that after 125 years they are closing our former main officer and laying everybody there off starting in April (or 90 days). Today I am sitting through a meeting where I am basically learning how some offshore employees are taking their first steps in replacing those of us who remain in a few years. Finally, on a personal note, my wife has become very uncomfortable from the combined effects of radiation for her breast cancer and starting on tamoxifen.

The layoffs and offshoring are not really a surprise. That is where the industry has been headed lately as our world basically has changed completely thanks to technology the last 20 years. But the closing of the former main office really struck a blow for former and current long time employees. Though not at the original site, our company was a major player in the small city our company was headquartered for over a century. And while the office itself has only been half full, if that, for many years and we were absorbed by our new parent many years ago, it is essentially the end of an era.

Actually, my wife was feeling a little better today, at least well enough not to take her pain out on me -- this "for worse" stuff can be really hard some days. But her mood swings from the side effects the last few days are starting to get to me. I feel myself starting to slink back to the bottomless pit I felt I was in back when she started chemotherapy in July. I can't decide if she is in so much discomfort that she either is unaware how much her words are hurting me or is purposefully saying these things so I can feel her pain. Or if this is just the drugs talking again. At least I'll have something to talk to my therapist about next week.

Thanksgiving

Not too many months ago I didn't think I'd have anything to be thankful for this Thanksgiving. How wrong I was. I am thankful for all the doctors, family and friends who have helped us this year, I am thankful my wife is on the road to recovery (and she is undoubtedly thankful chemo ends soon), I am thankful I work for a company that was very generous in allowing my work schedule to be as flexible as needed these last few months, I am thankful for our children, I am thankful we are in a warm, dry house -- with just a few less trees, and I am thankful for whatever else I have forgotten in this post. Happy turkey day all!

Into the chemo battle we go

It has been 5 days since my wife's first chemotherapy and so far, so (mostly) good.  The results of her final test showed she has an intermediate chance of recurrence so, once that was determined, her oncologist felt it was time for chemo. 

I went with her the first day and it was, all things considered, uneventful. We parked the car, signed in, got our parking ticket validated (valet parking, $4 all day) and went right in. Before long, she had her IV dripping into her chest and, with a little help from IT, got the WiFi working on my laptop (so I could work and save my time off) and her tablet. We saw the oncologist, nurse and resident for a quick chat, and then, before we knew it, a nurse was pumping the red devil into her. At that point she had me take a picture of the "poison" going through the tube so she could show it to the friend who loaned her her fight like a girl breast cancer shirt (which I thought was a karate shirt before this).They even gave her lunch (I had to head out to the cafeteria, next time I will check out the sushi place around the corner). Aside from feeling a little lethargic and dozing off while we waited in the radiology department after as we waited for the nurse to check her PICC port, she felt fine. She even went to work the next morning, though she had to return to the cancer institute in the afternoon to have her blood counts checked (pre-planned appointment).

What has been more amazing is that she has not had, as of yet, some of the followup symptoms she was warned about. While she hasn't felt 100%, and has complained of chemo brain fog and a yeast infection she hasn't had the nausea or fatigue that we were warned about. A friend confirmed that there will be weeks where she feels 100% after treatment and will go to the mall that is halfway between our house and the hospital to go shopping and other weeks where she will stop at the mall on the way home so she can take a rest. It helps that she has been drinking all the recommended water, eating right and still managing to go to the gym -- though taking it a little easy. 

I, on the other hand, have not been eating and drinking right. I still find bouts of anxiety popping up for no reason, especially later in the evening when my work is done and the children have gone to bed. Unfortunately I have always been one to go to food when stressed and have been making some unwise late night snack choices. While I have corrected that over the last week, I still seem to be enjoying/needing a nightcap too often now. I go to my own doctor this week for my annual physical and will see if he can prescribe me something to help me take the edge off.

I could go on about all the drugs she has to take now to function, but I will leave that to the medical sites. There is so much going on when I look at her medicines in the tray on our kitchen counter that I am bound to get them wrong. Instead she counts down the days left until the mouth sores appear, the digestive problems start, and her hair starts to fall out and does whatever she can while she can. Once she has to really start taking it easy, the new countdown to when she can resume all normal activities will begin.

It's chemotherapy time. Oh joy, rapture!

Just got off the phone with my mother-in-law who was calling to see how things were. When I told her that we had just received the word that my wife's chemotherapy for breast cancer will start tomorrow morning her first question was "how long does she have?" Nothing like a little optimism, though, all the fears she conveyed aren't any strangers to me these days. Basically, she asked me everything she hasn't wanted to ask her daughter. Will my wife die in a few years? How many fewer years will she live? Will I outlive my daughter? I lost my mother at 18 and it affected me deeply (our children are 7 & 11, and, on a side note, I lost my father at 20 that put me into a depression for several years that I didn't even notice at the time), what about your children? Is she ready for it? How likely is a recurrence (who knows)? You know chemo is poison (yes)? Are you scared (hell yes!)? As my wife has been saying we are doing all we can now so that, if there is a recurrence, we will at least know she did everything possible. 

Basically, aside from doing her best to remain healthy during and after the treatment, and getting checked constantly, whatever happens with her breast cancer recurring  will be out of our hands. I have to admit, there is something kind of relaxing about that. While long term the results may be good, they may also be bad. There is nothing more, at this time, that we can do, aside from hope that this treatment works and she has at least another 40 years (I'd say the odds are good, the cancer was estrogen fueled and when this is done, she will be in menopause meaning no more estrogen). And sometimes you need to make peace with that.

But those worries are for another day. The sun is still shining, the plants are still green and winter is still a long time away. Amazingly. the changes in our eating and exercise habits over a year ago coincide quite nicely with what is recommended for her going forward. For now she is reasonably healthy, probably healthier than many 41 year old mothers of two children. For the moment, she is at the gym, getting in her last heavy cardio/ weights workout for at least the next 7 days. The saltines, water bottles and sports drinks are ready. There is no peace to be made today, we are at war. Tomorrow begins a new chapter as she begins the next round of the battle.

Doxorubicin, cyclophosphamide and paclitaxel for breast cancer chemotherapy, oh my!

Her hair is cut short. Her chemo bag is packed. The PICC line is in. Her eReader has been loaded with books. The cancer institute's WiFi and valet parking have been checked out. The laptop lapdesk has been purchased. Child care has been almost taken care of (since we don't have a precise chemotherapy schedule yet we have a lot of contingency plans set up). I guess we are ready.

It has been almost 2 moths since my wife was diagnosed with what we later discovered was Stage I breast cancer with a very aggressive tumor (and I've blogging about it ever since). Due to the aggressiveness of the tumor (pathology report showed a high mitotic (cell division) rate and weird nucleus), she has decided to take chemotherapy instead of just radiation treatment, even though her margins were clear and her lymph nodes negative after her surgery. She likens it to killing an ant hive found in your house. Though the exterminator killed the hive (the tumor), there still may be a few ants  wandering around the house (microscopic cancer cells in the bloodstream) that could cause havoc later. As she put it, it was bad enough telling our children she had cancer now, it would be worse telling them in a few years that it had come back and she hadn't done everything possible to make sure that wouldn't happen. I worry what the chemotherapy will do to her health, both short and long term, but I don't really see any good alternatives.

Doxorubicin, cyclophosphamide and paclitaxel, oh my! doesn't have quite the same ring as "lions, tigers and bears, oh my!" but it does invoke that same level of fear as it did when Dorthy exclaimed those words in  the Wizard of Oz. My wife will be part of a NSABP Protocal B-49 phase III clinical trial where she will be taking a combination of doxorubicin and cyclophosphamide once every other week for 4 cycles (8 weeks) followed by paclitaxel once a week for 12 weeks for her chemotherapy. These are all chemotherapy drugs that have been used for quite some time, the trial is playing around with dosages, seeing if there can be changes. Though this treatment will be rougher than average, she is happy to be in the aggressive trial, and the followup procedures for the next 12 years, as it hopefully reduces the risk of recurrence, but it sure looks like it will take a lot out of her. Fortunately she is young (41) and her heart is strong (according to the tests she had done to see if she could be in this trial).

The thought of chemo is obviously getting to her already. The other day, while taking the children to a movie, she raided the theater's candy section eating more junk in an hour than she has eaten in a month (she was amazed her weight was the same when weighed at the hospital yesterday). Then she went shopping like a mad person to get a birthday gift for one of my daughter's friends that she had forgotten about before arriving home and noticing the 7 on the invitation wasn't for the date of the party but for the friend's age. She told her mother over the phone that she wonders what will happen when the drugs really begin to affect her mind. She keeps expressing fears that she won't be around to see our children grow -- many of the blogs we've found don't have happy endings, which makes sense as the ones with happy endings stop writing pretty quick for obvious reasons.

It's getting to me too, I found my pants were a bit snug the other day. Not really surprised, I've been over doing it with late night snacks lately and I've noticed the wine rack is looking a little depleted (it had been filled with small bottles from Trader Joe's, those can get knocked out with a few glasses). Fortunately, for both of us, we also enjoy taking our frustrations out at the gym and there was a nice 45 minute spin class at the Y last evening to battle our food sins. Today will be an hour on the treadmill I think.

She is upset that she won't be able to do any heavy exercising the weeks she has treatment (blood vessels can rupture from pressure). And she may have to readjust her FMLA paperwork from intermittent. Fortunately we have emergency savings for when/if her leave becomes unpaid. She also decided to get a wig for when her hair falls out, not so much for her but our 11 year old and 7 year old children, who have become noticeably more clingy and are looking to take advantage of our slightly reduced disciplinary standards (Dad, May I have ice cream? Yes. May I have a glass of diet soda? Yes. May I have a cookie? Now, wait just a damm minute!)

Yesterday she had the outpatient procedure to get a PICC line implanted in her chest for her chemotherapy infusions (better than getting stuck with a needle each time). It was a quick procedure that she watched being done on YouTube beforehand (amazing what is available online). She remained awake for, we spent more time waiting in post-op. We talked. She is obviously worried, not so much for the short term, which is looking OK, but for the long term. She is hoping this treatment gives her at least 12 more years (the time frame of the clinical trial), if not more. 12 years would get our youngest into college, at which point I could sell our house (which will be paid for by then) if something happens to my wife (or vice verse as I will be in my mid-50s in a dozen years and something could easily happen to me) and we don't have her income anymore to help our children. We both have substantial life insurance policies but now I am realizing we may be under-insured if something happened to one of us while our children were still young -- I don't know how I'd save for college on just my salary while the children were still young, especially, as a single parent, I would have to make sure I stayed in a non-traveling, flexible work position. She threatened me by demanding nothing happen to me as she doesn't think she can do this herself.

It is interesting how the mundane gets in the way of all this. While waiting for her prescriptions to be filled, I wandered over to the office section of the store and purchased a laptop lapdesk so I can work while waiting for my wife -- trying to conserve time off for more pleasurable activities, or for times when I really need it. She checked out a web site of things to do before chemotherapy and quickly made appointments with her OB/GYN and dentist. We are constantly updating our phone calendars to see if anything bumps into various doctor appointments. Long term plans are non-existent these days. Short term plans are questionable.

At least we are discovering who our friends are. The amount of the support we've been given has  been overwhelming. One neighbor baked cookies for us. Another took our children into her home before 6:30AM yesterday (we had to be at the hospital at 7) and drove our children to camp. One friend has offered to take our son to Six Flags Great Adventure  (near here). Another friend will take our daughter to the shore tomorrow.  Another will have our son over for dinner. Another from our temple will watch our children all day if we have to get chemo on a non-camp day (all these friends have children around our childrens' age, which is how we became friends with them). Our son's karate school, which is a few blocks from the last friend says our son can hang out at the school during morning classes if he wants.

A lot of scary things are about to happen to our young family and I hope we can look back on these days in a year and think, one bump over and done with. But I will tell you the most scary thing I've seen recently, my wife's hospital bill from the day of her surgery -- over $26,000, almost all covered by insurance fortunately, that was only for that day. Looking at the statements from the hospitals she estimated her insurance company has already spent over $50,000 on her and she hasn't even started the chemotherapy yet (plus the years of aftercare). I am getting a better understanding of how easily it is for the middle class to fall  into poverty due to one little medical disaster. Though we are in the top 10%, which with NJ's high cost of living is truly middle class, a $50,000 medical bill would sting. And we're lucky -- we have 401ks we could deplete and a house not underwater that we could sell (we were smart enough not to listen and buy more house than we could afford at the time -- now that we could afford a bigger house we see no need to do so, we were also lucky enough to have bought our first co-op in 1997, just as the NYC area market started to take off). Fortunately we have good insurance and, looking forward, at least for now, don't need to worry about lifetime insurance caps or an inability to get coverage due to what is now a preexisting condition. But that can always change. Man plans, God laughs.

Breast cancer doesn't care if you don't get a mammogram because you are under 50

The number of women in their 40s undergoing mammograms has declined after the U.S. Preventive Services Task Force recommended that women delay regular breast cancer screenings until age 50, over their previous recommendation of age 40. Fools.With something like 1 in 8 women getting breast cancer women are crazy to not get mammograms/MRIs no matter their age. As I have recently discovered, breast cancer doesn't discriminate against the young.

My 41 year old wife has been getting mammograms annually for several years due to a family history. Sure enough, this year, a lump was found that was cancerous. She had a lumpectomy and is now preparing for chemo (Stage I tumor was very aggressive, 8 of 9 on Bloom-Richardson scale). And my wife was lucky. A 40 year old woman in my wife's office, who didn't have a family history of cancer, went for her first mammogram last month. Not only was breast cancer found, but it had spread into the chest. Hopefully it has been caught in time.

Now imagine if either of them hadn't had their mammograms at 40/41. While my wife would have had one due to family history anyway, her co-worker would not have had one under the revised standards. Then what?

I typed too soon about good breast cancer news

Cancer runs strong in my family. My mother had kidney cancer at age 60, her brother died of pancreatic cancer at 53, her mother died of ovarian cancer at 75 (though my grandmother, still mourning the loss of my grandfather the year before decided not to treat it so she could reunite with her love of a half century) and several of my grandmother's siblings died of cancer. I always thought I was the one with the ticking cancer time bomb. Turns out I was wrong (at least for now). The bomb was in my wife.

My 41 year old wife's breast cancer is Stage I. She had a lumpectomy two weeks ago and this week we read the pathology report that told us her lymph nodes were negative and her margins were clear. All good. But the pathology report had other information. The tumor itself, although small at 1.2 cm, was a high grade aggressive cancer which means there is a higher risk of relapse. Also, from the time of the initial biopsy just 4 weeks before surgery, the tumor had grown and was about to be on the move. Not good. However, this isn't the dark ages of the mid 20th century and I need to keep reminding myself of that.

Even without the results of her Oncocyte DX test my wife's oncologist is already looking to put her into a clinical trial that will put her in an aggressive chemotherapy regimen (once every 2 or 3 weeks for at least 4 1/2 months) because her Bloom-Richardson score was so high. The Bloom-Richardson score information is used for prognosis / risk of recurrence and scoring an 8 out of 9, which my wife did, means that the risk of recurrence is higher than someone whose tumor was a grade 2 or 3. Additionally, because the the tumor was hormone receptor positive for estrogen and progesterone she will be put into a medical  menopause so she can take inhibitors to take all the estrogen out of her  system (she can't take Tamoxifen due to potential blood clots). At least no more birth control.

I grew up in a home where my parents got sick while I was still young. I know how insecure that has made me and how I over worry about every little thing. When you become a parent, you hope you can learn from your history and not make the same mistakes your parents did. Unfortunately, this is one "mistake" (cells going rouge) that is out of our control. I worry that the cancer will come back, though I know I shouldn't waste my time on something I can't control. 

And then I still get angry at the unfairness of it all, especially when I see happy, healthy, older people. We are not 60 or even 50 when you realize something like this can happen. We are in our early 40s, the prime of life. We are still young. But now, suddenly, we are not. Forget about coming to the realization that we may not grow old together, I worry that she won't even see our children finish high school, especially our youngest who is only 7. And I feel sad not just for me and our children but for her too. Who plans to check out in the middle of the game?

I have had thoughts about life as a single parent but have decided to file that away if/until I need to think about them again as they are incredibly unfair to my wife (thoughts like I can always sell the house to pay for college if we are a one parent/one paycheck family when the time comes). And then I get mad at myself for thinking me, me, me and not her, her, her (although my me, me, me thoughts tend to revolve around the possibility of raising the children on my own, the thought of being with anyone else really does not feel possible). What is worse, is that I am really worrying about something that is, at worse, a few years off or, at best, may never occur or not occur for decades. It is as if I have forgotten how to live in the moment, doing normal things like enjoying life, saving for a new car or vacation (though my wife's illness is forcing me to reconsider my preference for saving and paying in cash over borrowing as who knows if we'll all still be here the day I can pay in full comes -- she wants a mini-van to replace her small passenger car, I'd buy it tomorrow except I really want to make sure she doesn't run out of sick time first).

Writing about this and seeing my thoughts on screen helps a bit. So will the therapist I will start seeing once the dust settles (still trying to decide if I see one on my own first or just go into family therapy with the children). Like most people, I can be a real jerk at times and this isn't helping. While I am trying my best to correct those bad habits, some so ingrained that I don't see them, such as yelling at my children as that was how I was raised -- everybody yelled in my neighborhood, it will take me time. And time may be running out.

Margins are clear and the lymph node was negative

It was a dark and stormy morning the other day in the Big Apple but, fortunately, that is no longer the mood here, though the clouds still remain on the horizon. Two months ago I barely understood that hearing the margins are clear and the lymph node was negative from a breast cancer surgeon was a good thing, but that is what my wife heard this morning. In plainer English my wife's breast cancer did not spread into her lymph nodes and the surgeon says he got all of the cancer and she doesn't need more surgery. Now she waits for the result of  the Oncocyte DX test (analyzes the activity of a group of genes that can affect how a cancer is likely to behave and respond to treatment, the higher the score, the more likely there will be a recurrence, meaning the benefits of chemotherapy outweigh the risks) and sees the oncologist to see if chemo is necessary (probably) or she can get away with just radiation. 

One troubling bit of information though. We examined her pathology report a bit more thoroughly after she returned home. Her Bloom-Richardson score was 8 out of 9 (details below). This information is used for prognosis / risk of recurrence and scoring an 8 means that the risk of recurrence is higher than someone whose tumor was grade 3, for instance. Also, from the time of the initial biopsy just 4 weeks before surgery, the tumor had grown and was about to be on the move. While it means that by catching it early we were incredibly lucky, this is not good. What this ultimately means is unclear. Short term, we see what the oncologist says. Long term, the outlook is unknown, but then that is the case for all of us. Still, it is one of those times where I wish I didn't have a cold, unemotional but logical skill set for work. Hopefully her oncologist can set our minds at ease when she starts planning out my wife's treatment plan.

To really put it in perspective, my wife has a co-worker, 40 (just a year younger than my wife), who is not as "fortunate."  This woman had her first mammogram a few weeks ago and her doctors discovered not only much more cancer than what my wife discovered, but that hers had already spread into very bad places. She hasn't even been staged yet but from what my wife said her outlook may be very grim -- the cancer may possibly already be in the chest and bones. Worse, she is a single mother, living paycheck to paycheck with young children and already out of sick time. So, from that angle, we are blessed (by whom I have no idea) to have gotten away with just a speed bump -- for now.

For now, we are focusing on the positive. As far as most of our friends and family knows, all is well and, for now, that is the truth. In the mean time, her next appointment at Sloan is not until January 2013, and then every 6 months until 2018. Nice to have long term plans. Hopefully we can keep them.

Stats from the pathology report:

• Histologic grade was 3 out of 3 possible (minimal or no tubule formation)
• Nuclear grade was 3  out of 3 possible (marked variation in size and shape)
• Mitotic Count was 2 out of 3 possible (8-16 mitoses per 10 high power fields)

See website links for detailed explanation

http://www.breast-cancer.ca/staging/infiltratingductalcarcinoma-grading.htm

http://www.cancer.gov/cancertopics/factsheet/detection/tumor-grade

Back to waiting on the roller coaster

My wife was talking with our rabbi this morning about blogs as she consumed some cookies from one of the nicer bakeries in the area brought over by one of our neighbors. Since her surgery, as she waits for the pathology report, she has been reading blogs from cancer survivors, noting most have poor endings. She has most recently been reading one from a woman who was also diagnosed at a young age and died less than 2 1/2 years after diagnosis (she was doing a search on lymphedema, as her arm is swollen from where the lymph node was taken and found this woman's site). Reading the woman's initial entries, her diagnosis and initial report seemed much like my wife's, but different. Almost 2 months passed from the time she discovered her lump to a diagnosis of cancer, my wife's diagnosis came within 3 weeks. I think part of that time difference is that the other woman, who just happened to have been my wife's age (both born the same year), was diagnosed in 2005. Reading the blog, though it got depressing in the end, shows how much has changed in treatment in just 7 years. It also shows how much is the same at the begging with optimism and hope. The rabbi noted that the ones with happier endings pretty much stop after surgery and treatment because, fortunately, there is nothing more to write about. So for the few who are reading this, I'll add another post. But I also don't have much to say.

Tomorrow my wife goes back into the city to have her followup post surgical appointment and, hopefully, get to hear if the cancer had spread to her lymph nodes (as of Friday afternoon the labs hadn't come back). Afterwards, she will meet with an oncologist at the hospital to get their opinion for followup treatment before meeting with another later in the week closer to home. Just as in the initial days of diagnosis, we are back on that roller coaster of nerves. Tempers are getting frayed. Food is being consumed (those cookies were good). Weight is being lost (I tend to eat when stressed, my wife likes to exercise and finally headed back to the gym the other day).

I am learning much about myself the last few weeks and some things I do not like at all. Cancer does make one appreciate things more but it is also bringing out some dark thoughts and I wonder how, if things go bad tomorrow, I will be as the husband of a sick wife, caring for her like we cared for my mother when I was in my early 20s and how I would fare as a single parent. I don't like some of the thoughts that pop into my head when I give myself a true self assessment. My temper is already shorter than usual and I find myself screaming about meaningless things like spilled iced tea. My office offers psychological therapy and as soon as things calm down, or at least get into a predictable pattern, I think I shall take advantage of it.

One thing I've noticed is a change in my thinking when I am alone with the children. Like many modern fathers, I am more involved in their daily lives than my father was in mine. Due to a flexible work schedule, I get them off to the school bus in the morning and work at home several times a week so that I am home in the afternoon to take them to after school activities. While I do the weekly grocery shopping, cooking and some chores around the house, my wife, like most women, still does the bulk of the house work. However, the last few weeks as medical appointments and other things have kept my wife out of the house more often then usual, I find I have to do a little more. Suddenly I am getting an insight of what it must be like for single or otherwise widowed fathers and I don't like it.

My wife's disease is making me realize how important it is to have two parent families and what a struggle single parents must go through. We are fortunate to have friends and family willing to help us now with the children, others are not. We also have the resources available to learn as much as we can, while paying all out bills. Others do not.

Speaking of the children, we are trying to keep things as normal as possible for them. We were supposed to go on a week's vacation last week, which we cancelled as we didn't know how my wife would feel. One of the nice things about living where we do is that we can hang a left onto a major north south road outside our development, drive 100 miles south and be in a popular vacation spot that is totally different world in about 2 hours (for day trips, we live 30 minutes from the NYC version but that isn't as relaxing as getting out of Dodge). So by mid-week, when she felt well enough for a long ride in the car, we quickly packed, arranged for a neighbor to watch our dogs, and headed down to the shore for a few nights, opting to stay in a quiet town at a fancier hotel than we normally do when we head down there so my wife could take it easy. No rides on the boardwalk this time, just the beach, pool and zoo. Oh and did I mention the hotel had several bars and restaurants attached which meant we could actually have a few drinks and not worry about driving? It was a nice break.

Now break time is over. Friends, neighbors, family and fellow congregants from our temple are asking when we will need child care again (don't know, a lot depends on Monday). My wife hopefully returns to work on Tuesday and I return to my office Wed (telecommuting for now). Soon my wife will begin radiation or chemo (or both) depending on what the oncologists recommend. Once that happens, the rest of our summer, and possibly our year, will be mapped out. But first we have to wait to hear from the pathologist if the cancer had spread. And that is the roller coaster.

Stage I never sounded so good

About 15 years ago, I had the best hamburger and watered down beer ever. It was from a local diner type of place in Brooklyn Heights that had different burgers. The occasion was me finishing off the NY and NJ bar exams after studying like a mad man for the previous two months. Though, it would be months until I would find out if I would be paying NY and NJ money every year just because I passed their exams, the burgers tasted so good, at least in my memory, because it came right after a stressful situation -- in other words it was my relief burger. I thought I would never repeat and have a burger taste so fine ever again, but I was wrong. Last night we had a burger that tasted just as sweet -- the post-lumpectomy hamburger.

The stress had been growing the last week. We went to a comedy club last week on spur of the moment (and also because my brother volunteered to babysit) and it was such a relief to go out and eat, laugh and chat with another couple we met there without someone asking my wife "how are you feeling?" Meanwhile life carried on as we approached the date of surgery. The day before my wife bussed into the city for her last round of pretests. Of course the hospital didn't call us to tell us her admittance time so, with her cell phone battery going red, she made one final call to me, from the hospital, to call the hospital to find out the time. She later discovered that was a good move as the outpatient department can be very bad about making those calls in a timely matter.

They told us her admittance time was 2 PM, so we immediately called our morning/get the kids on the school bus sitter and said they were relieved. This disappointed our daughter as one of the women was her Sunday school teacher, Upon hearing this, she decided to come later in the evening (once we realized we had a later surgery time, we knew we'd be home late) to relieve the after school sitter, which was very sweet. The nice thing about the late start was not only was my wife able to go to the Y for a final work out, but that I was able to work a few hours and was able to vacate my planned day off, saving it for a nicer occasion. 

The other advantage, and those in the NYC area will know what I mean, is that we managed to avoid both the morning and evening rush hours. Driving into and out of Manhattan is not that bad if done out of peak times. And once in the city, traffic moves at a slow but predictable pace. While I don't love driving in the city, I equate it to driving my wife's Civic over my larger car. In her car I feel the road while I generally float in my car. When driving in the city, all my defensive driving sensors are on full alert, a big difference from driving in our fairly quiet suburb. 

Since it was post-rush hour, I guesstimated that the trip would take 90 minutes which was right on the nose (despite Google maps telling me it would take 1:04 or 1:14 with traffic) -- 60 minutes to get to and drive through the Lincoln Tunnel, another 30 to get across town. We wanted to get in a  bit early so we could stretch and walk around a bit before going to the hospital, so we left home around 11:30 and had the car parked in the hospital's subsidized lot (rate I paid was the same as nearby commercial garages I had coupons for -- pro tip: if driving into Manhattan, print out coupons for garages near where you are going, you can save a ton of money -- but was actually connected to the hospital by tunnel) by 1PM. We wandered a bit on the east side, just talking, burning off some energy and then, at 1:45, entered the hospital.

The waiting room was crowded and my wife's surgery was delayed, so we sat. We found out later that it was due in part to complications with some earlier surgeries. So while my wife's actual surgery was scheduled for 3:40, she didn't actually go under the knife until 5:20. We found this out as we sat in a consultation room she had been called into at 2:30, and where she changed in, as she couldn't get a room in the outpatient ward right away due to overcrowding. At least, once we knew surgery was going to be late, we could inform our child care people we would be home late. We had some more waiting before finally being called into an outpatient room.

We met the anesthesiologist, who explained what he would be doing etc. And then, after mistaking the patient monitor for a flat screen TV (thought it looked funky) and getting a nurse to come in, my wife more or less kicked me out. So, while she waited and did  some sit ups, I took a walk. Now we used to live in downtown Brooklyn/Brooklyn Heights when younger and used to wander the city but foot often on weekends and I decided to repeat the experience. So from York and E.66th St, I wandered up to 92nd Street & Park Ave. I stopped for a slice of real NYC pizza on Second Ave somewhere in the 80s, seeing first hand what some merchants have been complaining about, that their stories are buried behind construction equipment for the Second Ave subway (no idea how those businesses can survive as pedestrian traffic is routed away from their doors)  before continuing on my mission. Our wedding anniversary is this weekend and I wanted to find a nice piece of jewelery for my wife and there is no better place than Madison Ave on the Upper East Side.

Perhaps I should have specified that I wanted a piece that would be less than our mortgage payment. While we make a nice living, I forgot we don't make a Madison Ave living. Sheesh. Fortunately I finally stumbled upon one of those old NYC type of throwback stores -- an upscale, old fashioned pharmacy, with sales clerks and a vast fragrance selection. Reminded me of the little pharmacy that was in my old neighborhood that also offered that rare thing these days -- customer service. With just a few questions (after I told her I had no idea what perfume my wife wears, heck I don't even know what I wear as my wife buys all my cologne) she was able to pick out a $100 perfume that my wife later told me was perfect.

Unfortunately I wandered a little bit more than I realized and I got back to the hospital just as my wife was being taken into surgery for her procedure. While that did give me another chance for a last minute trip to Bloomindales for a last chance for the jewelery I was looking for -- I basically just sat down with my book for the wait. The nurse said the surgery should take about 50 minutes, so I could expect to speak with the surgeon in about an hour. One hour came. Nothing. 6:30 came. Nothing. My phone rang, it was mother-in-law. I told her my wife was still in surgery. She told me she would call the house and speak to our children.

And then I waited some more. 6:45. Still nothing. And that is when I began to get a little nervous. Fortunately, as I was about to bite some one's head off, the staff came for me and told me my wife was in recovery and the surgery went well. Whew. I called home, spoke to our son, and told him mom was doing OK. He was relieved. And of course he hung up before I could speak to our daughter or sitter. Kids.

The surgeon got held up so they eventually brought me to the recovery room. My wife was alert and talking, unlike my grogginess after I had wisdom teeth removed, she said she was wide awake alert as soon as the drugs keeping her sedated were removed. The nurse gave her some basic instructions and then the surgeon came in.

The surgery went very well, he said. The tumor, though over 1cm, was small and he got all of it plus clean margins. The tumor was in the skin and he only took one lymph node. Pending on the lab reports, he said the tumor was Stage I and he believed that this would be it. Whew. What a relief. If you told me 6 weeks ago I'd be happy to have my wife's breast cancer staged as a one I would have thought you were crazy. Funny how fast your world can change.

We left the hospital and walked up to First Avenue looking for a bite to eat as my wife was starving, having not eaten all day. We soon found a nice, Irish pub -- they type of place we used to frequent when we were in law school and didn't have the parenthood pressures and responsibilities that put those days to an end for us a long time ago. We looked at then menu, considered our usual healthy meals, then said to hell with it, we wanted hamburgers. Nice big, juicy, greasy hamburgers. I also had a beer (wife was still on Vicodin). I gave my wife her anniversary gift a little early, which made her extremely happy. The beer and food arrived and we devoured our burgers with glee. While we ate and drank, we felt a huge weight lift off our shoulders. Though we still don't what is next, we felt like we were free of what has been keeping us down for the last month. Best dammed hamburger I had in the last 15 years.

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.

Now the waiting for the lumpectomy begins

For better or worse. That is what we said all those years ago and now, on the eve of our 15th wedding anniversary, we will experience the worse -- at least so far.

My wife met with the surgeon at Memorial Sloan-Kettering yesterday and is scheduled to have her lumpectomy in 2 weeks, at which time they will also check her lymph nodes, with her radioactive seed plantation the day before. Next week, however, she will go in for a bilateral MRI  which, as her initial radiologist predicted, they would resist doing as they feel it leads to over diagnosis but they quickly relented when she pushed the issue, noting her breasts are heterogeneously dense, which sounds like it could be kinky but isn't. The surgeon told her he believes the tumor to be stage 1, but that will be confirmed by the results of the sentinel lymph node biopsy (and she will also be tested for the BRCA gene).

While she already has the time set for the plantation, they will not give us the time for her lumpectomy until the day before, which is hard when you have small children. We can't just go "bye, remember to lock the door when you leave for school" if the surgery is early or have no one home if the surgery is late. While we have people from our temple standing by, a little pre-notice would be nice. For now, there is nothing to do but wait, and hope my wife doesn't make any other detours on her pre-surgical trips to the city by stopping at places like Saks when she is walking between where the NJ Transit bus drops her off at the Port Authority Bus Terminal on the west side of Manhattan and Sloan on the east side (I'm driving her in on the day of surgery but, as former long time NYC residents now exiled in the suburbs, we are vary comfortable taking mass transit -- the bus to the city, which takes a little over an hour depending on time of day, is a short walk from our house).

Of course, when you are waiting, you start doing some research, which can be good and bad. My wife has had a couple of good discussions with a woman from our congregation and one of my mother's cousins, both of whom had lumpectomies in the past and both of whom went to Sloan. I also spoke with another cousin whose mother was diagnosed at 49, did not get the best treatment by her doctors (she went elsewhere and they didn't get all the cancer), and ultimately paid the price. At least I now know why her father was really, really pissed afterwards for a long time. We also have been viewing videos on the Sloan YouTube breast cancer page, a serious of taped lectures by senior department doctors which do a pretty good job of explaining breast cancer procedures for laypeople.

One thing we have discovered, how much more pleasurable it is reading ebooks for this over traditional print media. My wife had found a really good breast cancer book at the library and decided to purchase an electronic version as it is a thick, heavy book. Not only is it easier to carry around and read, but we realized we could download the book to multiple readers (smart phones, tablet computer) as long as we had the right app and signed in to the same account, meaning we can both read the book together or quickly reference it if we are somewhere without the reader or tablet. Nice that we can both easily reference the same material on our own devices in lieu of one reading a passage and then passing the book to the other to read and then comment on.

Other research we did revolved around the pathology report, which we saw for the first time yesterday. Doing medical research before bed can be a dangerous thing. Some doctors say a high Ki-67 marker is bad (my wife is at 30%) others call it a poor man's test or just a prognostic indicator they wouldn't necessarily base a treatment decision on. Her Her-2 ratio was 1.08 and not amplified, some said that was good, others not so much and that again it was just another prognostic indicator. The estimated SBR Grade is 2/3, which seems to imply that her cancer cells are poorly or moderately differentiated and growing faster than we would like it to be, but we don't really know what that means. We ended up finding a lot of medical research papers that were a bit outside our field of expertise but did provide the occasional explanation of a term that we could understand. We've been through the message boards with mixed results. It would really be nice if some of the sites that try to define something would explain why X is bad instead of just stating it. We'd ask questions but, at this point, we just don't know enough about what is going on in my wife's body to ask the right questions without scaring ourselves.

Our children, 11 and 7, still seem to be doing ok, although we've noticed they are a bit more clingy and both do not really like it if one of us is not in the bedroom end of the house (we have a "L" shaped ranch) when they go to sleep. I noticed our 11 year old took significant interest when my wife was reading a mommy is sick type of book to our daughter before bed the other night. We are trying to keep things as close to normal as possible, letting our 7 year old have a sleep over Friday (that reminds me, need to buy booze for myself) a family fun day with our congregation on Sunday. We were to go away the week of the 17th (school ends the 15th, camp begins the 25th) but that is cancelled, though we may slip away for a night or two down the Shore instead if my wife is up to it. It really hit home when my wife got her FMLA paper work filled out (fortunately I have a flexible work schedule and can work remotely, or even go into my company's main office which is a short cab ride from the hospital, so at least my paycheck will still be coming in if my wife is forced to take unpaid leave for an extended period).

It will take 10 days post-surgery for the lymph node results to come in, at which point we find out if my wife gets chemo or radiation (tamoxifen is a given). Also, we find out if the margins are clear or she has to go back. Then finally there is the chance she will still need a mastectomy. Left unsaid, for now, are our fears that the cancer has spread, there will be a recurrence and that she may be a part of the small percentage who don't even make it 5 years. I suspect we will be living with that white elephant in the room for a long, long time.

Hopefully, we will get the good news that the tumor can be taken out with the lumpectomy, radiation will eliminate the cancer cells and we can go about our lives and continue to raise our family with just a checkup for my wife every 6 months. Funny what is considered good news these days.

My wife's #breastcancer - week 2

In a normal year, the Wednesday before a holiday weekend, when Thursday is an all day office outing at a ball game and Friday is a personal time off day, I'd be cruising into the weekend by now, thoughts of relaxing and fun at the top of my mind, as I take a little break before our planned vacation in a few weeks (the week after school ends and before camp begins). This is not a normal year. This is the week after my 41 year old wife was diagnosed with breast cancer and everything changed.

To those who don't know, all seems normal. I went to a work barbeque with my son over the weekend while my wife went to a dance recital with our daughter (last minute scheduling boo-boo). We both still go to work and the gym. After school activities with our children continue. The chores get done, the groceries shopped for, the children fed, the dogs walked ... oops .... good thing we have laminate and hard wood floors. Next week, when my wife goes to see the breast surgeon (never knew how long it takes to get records transferred 60 miles) that will change with me picking our daughter up from dance class in lieu of my wife. Probably the first of many changes. Cancelling the vacation will probably be number two (we were supposed to have our wood floors repaired, we had a leak in our slab under the floor, plumber had to chop floor to get to pipe).

It took until the weekend, but I finally got on the same page with my wife. I realize now I was basically sitting Shiva, mourning what was, last week. But, just as when my father and brother died, I began to accept what was and got ready to move forward, something my wife had done a week earlier when she had seen the MRI, a week before the official diagnosis. My mood is generally positive, with patches of sadness and "why us?" pity thoughts now. Otherwise, there is not much new on the cancer front. Plan is to still see the surgeon on the 30th, get staged and hear the options. We've been looking up lumpectomies versus mastectomies but, basically, aren't deciding anything until the surgeon tells her what her options are. Both have pluses, both have negatives.  The lump is under her breast, almost on her rib cage, so we're not sure what that means and can't really find information on what that means for her surgical options (and that is assuming the cancer hasn't spread or she doesn't have the Jewish genetic gene). Adding in we are the parents of the young children makes for an interesting twist.

The waiting is the hard part.  We are ready for battle but am still waiting for the order to head to the front. Last night, she took some of her anger out on me. Of course, "it wasn't about the cancer," it was about something else. When I talk to someone professionally, I am a "just the facts ma'am" type of guy, especially if I am talking with someone I do not know. My wife is not, providing details not germane to the conversation, especially when she is nervous or upset about something, as she has been since her diagnosis, sort of like my wood floor story above. Yesterday we had to call our bank to set up some automatic payments and transfers from her account to mine (has nothing to do with the cancer). We were on the phone with the customer rep during our lunch breaks, and she started talking, giving details that weren't important (we opened this account to do X etc) when I cut her off and said, I just need to know what to do on their site. We both had to get back to work and I could see she was in a wandering mood. Later that night, just before bed, she told me she thought that was abusive that I did that in front of the rep on the phone. That got us into a short, intense fight about a subject that wasn't important. She accused me of being angry with her for getting sick. I replied, I was angry that we were having a stupid fight about my usual trying to get to the point in a professional conversation. It ended with me telling her I'm not going anywhere and to knock it off. I guess this is the first of many stupid fights. I've heard stories of marriages falling apart in times of crisis, I think I am beginning to see how that starts.

The other thing we've found comforting are emails and calls we are getting from breast cancer survivors we know, but didn't know who had had breast cancer. For example, one of my mother's cousins told me she was diagnosed at an age 4 months older than my wife is now. I didn't even know she had had cancer. Now, almost 20 years later, she is retired and traveling around the country with her husband, as healthy as can be (she had a lumpectomy and radiation). My wife talked with one her gym class instructors (my wife has been doubling down on the gym while she can) who also had a lumpectomy 25 years ago (was diagnosed at an even younger age of 38) and is also going strong. I also talked with someone in our temple whose first wife died from breast cancer, saying if things don't go as hoped -- my wife, who is able to read people fairly well, said the silence was deafening when she told the nurse at the biopsy that it is good the cancer was caught early -- he will be there for us. I haven't really talked to the cousin whose mother was diagnosed when we were teens, who ultimately dies from the disease about 15 years later when the cancer came back.

Another concern for us are, of course, our children. I've already made sure our 11 year old is carrying his key and given him instructions on what to do if no one is home (open door for him and his sister, lock it, watch TV and wait for someone we know to come over) when he gets home from school and, if he doesn't have his key (usually leaves it in his book bag) where the hidden key is. Our rabbi says he has at least 10 people lined up to help us and a general e-mail from the caring committee has gone out, so that is a relief as we don't have family in the immediate area (my brother lives 15 miles from us, but he travels constantly and he and his wife have an 8 year old and a 2 year old). 

We told our son's teacher about my wife's illness. Our daughter, who is 7, doesn't want us to tell hers, though we probably will shortly as school has another 3 weeks left. After that we have other child care issues to deal with as we have a week without camp or school and then camp only 3 days a week (I work from home a lot and the plan was to save a few dollars by only having the kids go to camp part-time -- something I am hesitant to change as my wife goes on part time FMLA when her sick and vacation time begin to run out and I start working less OT hours to help her). One day at a time I suppose.

So that's it for now.  I'm still not sure why I'm writing this, aside from getting it off my chest. Maybe I'll look back on this one day and laugh about how nervous and worried I was and how self-centered I seem to be as these words come out of my hands. Maybe I won't. If nothing else, there will be a note on some future search engine of what a lump under the breast means (especially as I finally figured out how to add meta tags to the new Blogger).

My wife has breast cancer -- the first 48

One day you're traveling through life without any serious cares and then one day you're not. It is nice to find out how many people are there on that day, though I wish we hadn't had to.

Two years ago on my birthday, the Times Square bomber failed to cause mayhem in NYC. One year ago, the President announced that Osama bin Laden was dead. So this year, when my birthday passed without any major disasters I figured the jinx was gone. I was wrong. Something did happen that day. That day my wife went for a mammogram.

Though only 41, my wife has been going for mammograms since she was 35 as her mother had post menopausal breast cancer several years ago. A week after the mammogram, her doctor called her back to have the radiologist take some pictures as they thought they saw something. Nothing unusual as she has fibroids in her breasts, which tend to look "funny" in the mammograms. This time they looked at the pictures and scheduled a biopsy for her. When she told me this I asked how she was doing (I was at work still) and she said she cried on the drive home. I told her she was probably over reacting as its probably just them covering their butts. What she didn't tell me was that she had seen the pictures too and could see it looked different.

On Monday, I drove her to the hospital for moral support. I was in the waiting room for about 90 minutes when they called me in to see my wife and speak to the radiologist. Now before going in my wife said one of the techs told her they can usually tell if there is cancer right away and would give a hint if everything was ok. Instead, while examining the initial results, they stopped the small talk. We waited for the radiologist and when he came, we just engaged in small talk for a few minutes while he explained that the results would be back in two days. As we were leaving my wife commented that he had a very good poker face. Though I was still optimistic, it began to dawn on me that this wasn't going to be another false alarm.

Wednesday came, I was working from home. The phone rang. It was her doctor's office. They wanted to speak to her but don't worry it's not an emergency. I told her I'd get a hold of her and have her call them back. My heart lightened for the first time in days. But, when I spoke to my wife, I found out the doctor I spoke with was just the OBY-GN. She had just spoken to the other doctor. It was cancer. Damm.

I don't remember much of what she said but we did agree we should start telling people. Then the parent instinct kicked in. Our children are 7 and 11. Someone needs to see them off to school, make sure they are here in the afternoon and take care of them otherwise, something I can't do if I'm with my wife in the hospital. One bad thing about getting cancer at such a young age with young children is that your friends and closest relatives are the same age with children of their own (and in our case younger children). Long story short, after a quick email to our rabbi, I discovered our temple's caring committee was still functioning and that by evening he had lined up at least 5 people who could help us (guess I better make copies of our keys). Turns out that was the easy part. Next I had to start telling people.

My first thought was just to do a status update on Facebook. Then I thought better of that and started to call my side of the family -- well actually text or email. The only actual call made from our house was later that evening when my wife called her mother to tell her the news. It took me 20 minutes to send out the first text to my sister and sister-in-law (didn't help I slammed the phone down onto my desk several times). Then I emailed my director (I had let him previously what was going on), to let him know that the results of the test were not as we had hoped and I would take his offer to be a home based employee for the time being (though I actually found going into the office yesterday to be a relief, once the operation is over and I have to care for my wife, my work hours will get a bit strange). After that, for a good period of time I just sat and stared at the computer. 

I tried to do some work while I composed myself (should have called it a day, everything I did after I spoke to my wife sucked). But then the first response to my text came in from my sister-in-law and I texted back details. Then my sister responded, first by text then by phone. I told her what I knew. All we had were the initial results. Lump just under 1 cm and cancerous. I then sent out emails to other family members, including her sister-in-law with a warning to make sure my wife's brother didn't call my mother-in-law until we gave the ok (we told the rest of her family after the call was made). I spoke with one cousin whose mother was diagnosed with breast cancer about the same age my wife is now (left unsaid, is that while her mother successfully survived that first round of cancer, it came back about a dozen years later, about the time my wife and I married,  and she succumbed to it three years later). 

The rest of the day was a blur. I did some initial research, like what to expect. Discovered that the eating and exercise habits my wife had started about 18 months ago are exactly what you should do after breast cancer. I did the grocery shopping like I usually do after work. Picked up the kids while my wife took her evening gym class like she usually does. Ate dinner, mostly because I figured I better eat something. My wife had already told the children she may have something wrong with her and that it may be cancer so, when she came home, we broke the news to our children. Our 7 year old pretty much ignored it -- she is too young to really understand, her tears will come the first night my wife is in the hospital. Our 11 year old, who has Aspergers, was a bit more blunt -- "Well mom I hope you live until i have children because I will need you  to babysit and dad has already said he doesn't want to babysit." Gotta love long term planning.

We talked a bit about next steps and how we were feeling but didn't really say much -- the shock still warm. I did notice I was getting email replies to my initial messages and reflected on something my mother once told me. I had a younger brother who died in a car accident as a teen. We had a large response at his funeral and the shiva calls that followed. We also received many sympathy cards. Years later, I was driving my mother home from work. A child of one her colleague's had just died and I don't recall how this came up, but she told me she had thrown away many of the sympathy cards we received unopened because she just couldn't deal with it anymore. Looking at all the unopened messages of sympathy I remembered my mother's words and felt like I truly understood them for the first time. Fortunately, I didn't follow my mother's move and, instead read my emails. As the responses have come in, it has been very pleasant to find we had more friends who really do care about us than we realized. I don't think we can do this without them.

I didn't sleep well that night and we were up early as usual. I went into the garage to go on the treadmill while my wife stayed in bed for a bit more. About 10 minutes in I realized I had forgotten to take my water bottle out of the refrigerator and went inside to retrieve it. It was then that I saw my wife sitting on our back deck with her morning tea, something unusual for -- usually she just lets the dog out and goes about her business. Instead of going back to the treadmill (I was going into the office yesterday, so my time was limited) I decided to sit outside and enjoy the peacefulness of the morning with her. There wasn't anything to say. It was if we knew that just as the peacefulness of the morning would soon be taken away by the awakening of our children, the relative peacefulness of our lives would soon also be taken away.

I drove off to work and was amazed to discover how little else was bothering me. Usually the commute is a long, grinding pain, but not yesterday. I didn't care about the trivial things being discussed on the morning radio show. I didn't care about the other drivers on the Garden State Parkway (except for the idiot by exit 137 who almost caused a multi-car pileup). I muddled through my work day, told a few friends what was going on and, fortunately, found myself so busy that I was able to take my mind off of things. Sometimes the routine can be very pleasant. But I also realized I was still in the dark cloud of depression that had fallen on me on Wednesday. Last night my wife and I had a longer discussion about how I was doing. As I said before, she had accepted her fate a week ago, I was still just coming to terms with it and told her that, emotionally, I am still not on the same page as her but that I'm there and will be when the bell rings. She reminded me that she is strong still and not going anywhere soon. Left unsaid is will she still be here tomorrow to see our children grow into adults or next week when she can hold her grandchildren. To think, just a few days ago, our biggest concern was getting estimates to fix our wood floors from a leak (house on a slab, leak in pipes embedded in slab under our food floor, plumber had to chop the floor to get to the pipes). Ha ha.

Today started like yesterday, except I went to the YMCA, as I usually do on days I work from home. I did my cardio, feeling good that I could take some of my frustrations about the events of the last few days out on the machines (my wife mentioned the injustice of her being young, staying fit and getting cancer while passing overweight people, 20 years older, smoking outside her office), I was surprised I didn't destroy the machine when the news got up to the Donna Summer dead from cancer story as it reminded me of what our life was now centered on.

But today I also started feeling a little better. I didn't have to remind myself to breathe in, breathe out. I had a really good conversation with one of my wife's cousins, who also had a health emergency when his children were the age ours now. It was after that conversation that I realized I was definitely in the 7 stages of grief. I am not grieving my wife, who is still alive and well, but I am grieving our old life. There have been several times where I wanted to pull over the car and just cry just as there have been a few occasions where I wanted to put my fist through the PC monitor when I didn't like what a web page was saying.  Just over 48 hours ago we were a young family, healthy, generally in good shape, and planning our vacation. Then we weren't and may never be again. And I am still working on accepting that.

If you've read this far, you are probably wondering why I haven't written about how my wife is feeling, at least not extensively. Well, I started writing this simply to get it out of my system. Then, as I continued, I realized this might be a good historical piece for our children one day -- though they don't realize it yet, this will be a major life event for them for this is the week mommy was diagnosed with cancer and everything changed, and realized I can't speak for my wife, at least not yet. Finally, I'm writing this for the next guy. When I was trying to sort out my feelings the other day I couldn't find the one thing I was looking for: the feelings of a 40 something father of young children whose wife has breast cancer. Greedy that I'm concerned about me at this time? Perhaps, but one thing I don't have is the luxury of time to talk to somebody about what I'm feeling so this is it. As several have told me, and I already know, I need to be strong for my wife and children and the sooner I work through all of this the better for all.