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.

President Obama out of the closet

As I write this, news reports are appearing that say that the President of the United States, facing a very tight re-election, has come out in support of gay marriage. Though this may simply be a  courageous political move to shore up his liberal base, it is still nice to see that some in our society may be getting civil rights that most of us take for granted.

By the way, this does not mean I feel churches should be forced to sanctify homosexual marriages. Quite the contrary actually. If a religious organization does not want gay marrieds or even gay singles  in their congregation than that is there right. An Imam, Rabbi, or Priest should not be forced to marry a homosexual couple because, though legal, it violates their beliefs. Contrary to that, an Imam, Rabbi, or Priest should not force homosexuals in another setting from getting married because it violates their beliefs. This is one instance were I feel church and state shall remain separate.

Soon will come the comparisons to incest or polygamous marriages and how, because society has abhorred them forever, so should we abhor gay marriage.Society's views about sex and marriage have evolved over time. The Bible allowed for married men to have concubines (friends with benefits in today's terms) and multiple wives (one is enough, though my working wife has remarked that she wouldn't mind a housewife for herself). More recently, marriages between black and whites in parts of America were abhorred by society. As recently as little over a century ago, marrying for love was abhorred in many societies. The definition of marriage is constantly changing.

Others will argue that this is a state's right issue. By that faulty logic, slavery would still be legal, schools and public buildings segregated and inter-racial marriage illegal in many states. While I agree the economy is the important issue for this election, a leader needs to take a moral stand. Too many of our leaders let injustice stand for too long in many parts of the country because narrow minded bigots thought God wanted them to discriminate. Too many feel that their religious opinions should have the force of law behind them and that is wrong in many instances (though  approve of thou shalt not kill in cold blood, I'm pretty sure my bacon loving friends would not like enforcement of the kosher laws).

Sometimes a leader has to let the chips fall where they may and tell those who do not believe in freedom for all: "No. You can not force your backwards looking view on others because you think a book written thousands of years ago says you should." It is not for you, me or the government to tell people who they may or may not love. If all are consenting adults and nobody is being harmed, than it is no one's business who marries who in a non-religious ceremony.

This does not mean I think President Obama is extraordinarily brave, however. Like LBJ in the mid 1960s with the civil rights movement, or President Lincoln when he freed the slaves in the rebellious states during the Civil War, he saw that the winds of change have been gathering for a long time and that now just happened to be the politically smart time to role the dice on this issue. LBJ used the recently assassinated President Kennedy to get the Civil Rights laws passed. Who really knows what JFK would have done. Lincoln himself has said he would have kept slavery if it could have prevented the Civil War. However circumstances in 1863 and 1963 changed, allowing those men to make political moves that would have been unthinkable a short time before. 

I say the President is in a similar situation. Circumstances have changed, perhaps through moderate America's response to anti-gay laws, perhaps to just the continued evolution of what is love. Pretty bold move? Yes. While one can argue white conservatives weren't going to vote for him anyway, he is risking alienating the black conservative (church going) vote. However, that is moot for the moment. 

The President has come out in favor of ending discrimination and that is always good. I am happily married to a woman and I'm in favor of gay marriage. Why should homosexuals get away with avoiding all the negatives of marriage just because they are gay (just kidding hon)?