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.