Yesterday we had an appointment with Dr. Manders, a breast surgeon at Christ Hospital.  This was a consult and a second opinion and we're still yet to decide who the surgeon will be.  Cathy really liked Dr. Manders, but didn't care for the drive to Christ.  It's in Mt. Auburn, between Clifton and downtown, so it's a good bit farther away than Bethesda North.  It is, however, a really good hospital, the same hospital where I had my thyroidectomy.  At that time we were really impressed with the hospital.  Traffic was horrible on the way home and Cathy was tired.  She was too tired to really be able to think about whether or not Dr. Manders is the right surgeon for her.  I was, of course, desiring to talk it through right away, but Cathy's fatigue served as a good buffer that will allow both of us to have a clearer mind when we do talk about it.  

Dr. Manders was very thorough, spending over an hour talking with us.  We talked about the protocol for Cathy's triple negative cancer and the Plans A, B, C, etc. for attacking it surgically and otherwise.  I'll try to summarize what we learned.  Like most of our doctor appointments it was a lot to process, but it seemed to align clearly with other consults we've had and with what I've read.

Right away, triple negative and BRCA1+ meant bilateral mastectomy to Dr. Manders.  There was never any other discussion.  This was pretty comforting to us because it indicated that she understands what we're dealing with and she's aggressive in her approach to long term healing and cancer fighting for Cathy.  We talked about the mastectomy and about reconstruction options.  Dr. Manders would prefer that a consult with a radiation oncologist help us in refining Cathy's choice in reconstruction.  I have a lot more reading to do to learn about types of reconstruction, but I'll try to accurately summarize some ideas we talked about.

Reconstruction using the abdominal wall is not a good choice because it is very risky in terms of maintaining blood supply, fighting infections, and opens the door to future abdominal hernias because of a thinned abdominal wall.

Reconstruction using fatty tissue from Cathy's belly could be good, but Dr. Manders doesn't think Cathy has enough fatty tissue to make two regular sized breasts.  Further discussion of this will be had with the plastic surgeon, though.

The two best options, in Dr. Manders's mind, are expanders under the pectoral muscle to be replaced by implants later and use of the latissimus dorsi muscle with or without an implant.  

I'll go more into the reconstruction process when I learn more.  The important thing about this appointment is the strategy, though.  After meeting with the radiation oncologist it will be determined whether or not radiation will be necessary and to what extent.  A needle biopsy and/or staged sentinel node biopsy about a week prior to the mastectomy will help to confirm or change the radiation plan.  If there is no evidence of cancer in the lymph nodes, reconstruction can be done in conjunction with the mastectomy or shortly thereafter.  If there is evidence of cancer in the nodes, radiation will most likely need to come before reconstruction.  Radiation can have some adverse effects on reconstructed tissue and particularly on implants.  

Dr. Manders looked at Cathy's MRI, scans, and other films, as well as conducting her own exam.  She could see the marker left at biopsy on the MRI, but could not see the tumor.  She could also not feel the tumor, thus declaring, "Awesome."

So now we can kind of see a plan, but we know that within that plan there are many contingencies and subplans, if and if and if and if.  At least we can see a clearer picture. 

Tonight I realized that I write a lot about the times that Cathy is feeling bad, but not so much about the times that she's feeling good.  I'm not sure there is any logic behind this other than the thought that maybe most readers are concerned about her and would want to know her status as she deals with tough situations.  There are, however, many good times - like today and the last few days.  Today, Cathy has felt quite good, in fact quite good for the last three or four days.  Last night and today she ate to the point that she was really full, even uncomfortably full, because the food tasted good and she had an appetite.  This week she has been able to attend the boys school open houses and meet the teacher nights, as well as Jonah's percussion preview concert tonight.  Most times she generally avoids crowds, not because she feels bad right now, but because her white blood cell counts are low and she's susceptible to infection.  I've written about her treatment weeks and her ups and downs, but I thought maybe an overview of a three-week period might be of interest.  These descriptions may be 12-24 hours off or vary slightly, but after three treatments this is what we've come to expect - ups and downs.

Day 1-2: Slightly nauseous and body out of balance, light appetite
Day 3-5: Pretty nauseous, desperately dry mouth, unbelievably tired, achy, no appetite
Day 6-8: Moderately nauseous, dry mouth, pretty tired, slight appetite, can't digest food
Day 9: "Ah, Tuesday."
Day 10-14: Slightly nauseous, dry mouth, fatigued in the evening, appetite returning, little trouble digesting food
Day 15-21: Intermittently nauseous, sometimes fatigued in the evening, appetite good, digestion mostly good

So those first 8 days are pretty hard on Cathy, but after that the bad feelings are to a lesser degree and not constant.  The tricky part is that from day 9 to day 21 nausea, bad digestion, or extreme fatigue can just show up without warning.  For the most part, though, those days are almost like normal Cathy.  During those days (and even when she feels awful) she looks good, smiling and joking.  She's just the best.

Two aspects of the theme of contrasts are on my mind. Tonight I want to write about this summer. This summer has been the worst summer of my life and the sweetest summer of my life. The pain and suffering that Cathy has endured and the knowledge of the more to come has been horrible. The fear that comes along with a cancer diagnosis has caused us to question everything in our lives. The changes in our lives have been unwelcome and abrupt, but some of them will ultimately make us a healthier and stronger family. Watching the love of my life have biopsies and surgeries, infusions of lethal chemicals directly into her jugular, chemicals that if spilled on her clothes would burn through the fabric, and the exhaustion from those drugs has made this summer terrible. Talking about the coming surgeries with their certain periods of extended pain and disfiguring results has been wrenching. Seeing Cathy's trepidation as we near these surgeries is frightening.  I don't know how to comfort her or what to say. I feel confident that I can care for her physically, but how do I help her heart heal?

This summer has been different than the previous 23 for me in the respect that I didn't attend a marching band camp. It's a sign of the huge change that my career will undergo in the next nine months. My sacrifices are nothing compared to Cathy's, but they are the ones that I live so I know them more intimately. No longer will I have the daily opportunity to challenge and be challenged by amazingly talented young musicians and incredible works of musical art. I fear atrophy of my musicianship and musical intellect. This horrible summer I've had to face this unknown and follow it through with faith that God has put me where he wants me. Simultaneously I look forward to the decrease in some of the less desirable aspects of teaching high school. The intermediate school is sure to contain lower levels of teenage angst and it's associated dramatic episodes. The climate at MIS will be uplifting on a daily basis.  I will be able to help Jonah get to school before I go and I'll be able to come home after school with rare exception. For the first time in ten years I haven't approached August with reservation. While I love teaching marching band and working with the students to see them grow and work toward achieving the unimaginable, August has signaled the beginning of the three months that I don't see my family. Thinking about the 90 hour weeks, saying good night to the kids on Wednesday knowing that I won't see them again until Sunday evening is always painful. Not having to face that this summer has been beautiful. 

The sweetness of the summer has come from looking at my family differently. I won't say that I value them more than I did before Cathy's diagnosis, but I certainly value my time with them all. I feel this summer I've come to know them in a way that is more loving rather than as a simple function of family.  While I know that Cathy is going to heal and be with us for many years to come, her cancer is a daily reminder that there are no guarantees that we get a tomorrow. This reminder has added a sweetness to each hug Jonah gives me, each joke Aaron tells me, and every spoonful of carrots I feed to Clara. It has reinvigorated my knowledge of how blessed I am to be in the world with Cathy. Cathy who sees the good in all, Cathy who knows that to have friends you have to be a friend, Cathy whose own faith increases my faith, Cathy who I love, Cathy who I want to be near. 

Each time I think of how my school year will be different and how I'll miss what I've known and loved about my work for so many years I will remember the time it takes to do all of that. I will also remember that each minute I spend doing that is time I spend away from my family. I don't want to spend any more times away from them. Our family needs time now and in the future. Too many memories are gone because I wasn't there to create them or because I didn't slow down enough to cherish them. And that subject is for tomorrow. 

Early on in the blogumentation of Cathy's cancer journey I wrote that we would experience a lot of ups and downs.  We have.  The ups and downs have been emotional and physical.  We've been through two-plus months of cancer now and have ridden the roller coaster of contrasting highs and lows.  The beginning was full of sharp lows associated with each piece of new information we received.  In all, the low points seemed to have been, and continue to be, more pronounced and obvious.  We are talking about cancer here.  This is not something that people look forward to or celebrate.  The ups have come from relationships and interactions with other people and connections that we make between ourselves, others, and God's will for us.  They don't seem to be as high as the downs seem low, but each of the ups are clearly up, bringing love, support, care, confidence, perspective, and many other attributes that are psychologically important in this battle.

I suppose that if I drew a graph of the ups and downs (which I can't quite do in the blog world) it would be characterized by sharp points that extend down and long, smooth, high arches that extend up.  The graph, if shown over time, would have a balance of highs and lows with our y value only slightly lower than it was two months ago.  While the whole cancer thing brings the general value down, we have been bolstered by the many blessings of family, friendship, and faith.  We've had our eyes open the whole time trying to see what God wants us to see.  Sometimes that vision has been apparent and other times we know it will take longer to unfold, if we're even given the opportunity to see its unfolding.

If my eyes would stay open a little longer tonight I would continue this discussion of ups and downs, contrasts in life.  There are two particular contrasts that have been playing in my head and will mean something to me if I devote a few words to them.  They will be the subject of the next couple of posts, but for now rest is in order.

Cathy is on the uptick, but still pretty tired.  She went with her parents today to visit the genetic counselor.  For Cathy, this appointment confirmed what we expected.  The percentages tell us that she should have a bilateral mastectomy and later on a salpingo-oophorectomy, which is removal of the ovaries and fallopian tubes.  The ovaries are not the most pressing of issues and can be monitored with CA125 blood testing until they are removed.  This is also a discussion that will involve the surgeon or surgeons, not one to be made solely by Cathy, me, and the genetic counselor.  Here are the risk percentages for various cancers given her BRCA1 gene mutation.  Having breast cancer, she has a 15% risk of ovarian cancer compared to <1% of the general population.  She has a 27% risk of developing another breast cancer after five years compared to 3.5% of the general population.  She has a 64% risk of developing another breast cancer before she's 70 compared to 11% of the general population.  So, the evidence for the bilateral mastectomy and salpingo-oophorectomy is pretty compelling.

Marty and Jayne had blood drawn today to see if either of them are mutation carriers.  They seem to not show symptoms, neither of them having had breast, ovarian, prostate, or pancreatic cancers in their lives.  Those are the other types of cancers associated with a mutation of this particular gene.  Dr. Drosick mentioned the possibility of a spontaneous mutation.  If Marty and Jayne come back negative then the mutation would be spontaneous.  A spontaneous mutation would be a good thing because that would mean that Cathy's brother's family is not at risk from his contribution to the genetic pool.  That wouldn't mean safety for Jonah, Aaron, or Clara, but would at least mean that Jonathan's family is at a lower risk than if Marty or Jayne carried the gene.

Pretty crazy stuff.  We learn new things every day - as we should - to try to stay informed and ready to make good decisions.  Many decisions lie ahead in the next 8-12 weeks.  We need prayers for wisdom and guidance!

Today was what we have come to expect from day 3.  That's good and bad.  It's good that there isn't anything out of the ordinary.  It's bad because Cathy just feels rotten.  She's spent most of the day in bed, in and out of sleep.  She has come downstairs a couple of times to eat a little jello and refill her water.  Other than that she hasn't eaten much since Tuesday morning.  She's lost 6 pounds since Monday, which has also come to be typical.  I expect that she'll gain most of it back early next week.  It's sad and hard to see, but she's tough and cool about it.  She doesn't complain, except that when I made pickles today she told me it smelled bad and she had to go back upstairs.  She also asked me to stop rocking Clara in the glider next to the bed because she was getting seasick.  Aside from that she just plugs along.  What a tough cookie.

Round 3 is a little tougher than rounds 1 and 2.  Cathy felt pretty bad by late afternoon yesterday.  She had this dose on Tuesday instead of Monday since we were out of town this weekend.  I'm hoping that she'll bounce back a little bit today, but I think it is more likely that the cumulative effects of the chemotherapy are just making it a little more intense with each successive treatment.  The good news is that she is now halfway through being poisoned.  She feels like she needs to turn the corner on feeling bad this round before she can really say she's halfway through treatment, though.


Bloodwork results showed she was a little below normal range in white blood cells, hematocrit, and platelets.  She was a little above normal range in red blood cell distribution width.  All of that is pretty normal for a chemo patient.  No results were far from the normal range.  High RDW and low hematocrit might indicate a slight iron and/or B vitamin deficiency, but nothing to be concerned about.


The kids are all doing well, with Jonah and Aaron busy with friends while Cathy is feeling bad.  Clara has grown up so much in the last month.  Her personality is developing rapidly.  She lets us know when something isn't to her satisfaction.  She is also pulling up on anything she can reach and has become a crawling speed demon.  


Peace and love to all.