'Tis the Gift

It's rare that Cathy and I have a quiet moment just to chat.  We had one of those moments last night, though.  Clara was asleep and we were sitting at the kitchen table waiting for the boys to come up from the basement for a family game of Scrabble.  Cathy told me that when she's healed she doesn't want to do so much.  I wasn't shocked to hear her say this, but she hadn't said anything like it in the last six months.  I've been pretty vocal about the changes that I've needed to make in my priorities, but Cathy has been pretty mute on the subject.

It's tempting to go through a list of things that both of us did before cancer and sort them into piles "quit" and "keep doing."  I think both of us have done that already in our own minds.  What we've both realized is that in the process of doing less we've drawn closer to God and to our family.  Personally, I've prayed more in the last six months than in the last six years - and I prayed a lot before.  I also pray differently now. I still do a lot of talking, but now I do more listening.  In terms of family, I know that I am more mentally/emotionally present at home in addition to the obvious increase in time that I am physically present.

Cancer is life changing.  We are clearly still learning - and unlearning.

'Tis the gift to be simple, 'tis the gift to be free
'Tis the gift to come down where we ought to be,
And when we find ourselves in the place just right
     'Twill be in the valley of love and delight.
When true simplicity is gained,
     To bow and to bend we shan't be ashamed
To turn, turn will be our delight
     Till by turning, turning we come 'round right.

Over the last six months we've done plenty of turning.  We haven't found true simplicity, but we've been pointed in it's general direction.  I feel pretty confident that we can come down where we ought to be and I have faith that we'll see the valley of love and delight - but, not on this earth.  That is a joy, not a disappointment.

Cathy is a Mammal Again

About 6 months ago when we told the boys about Cathy's cancer it was a little overwhelming for them.  We had decided that we would give them small bits of information over time - nuggets that were the right size to digest - rather than all of the information at once.  We didn't let their reactions bother us.  In general, they were kind of unresponsive.  I don't think that means they were unconcerned or uncaring, they just didn't really understand and would rather play games than hear about cancer.

When Cathy cut her hair just before it fell out, Aaron said something that has stuck with us. "Does this mean that mom isn't going to be a mammal anymore?"  We laughed, but when you're 8 (and especially when you're Aaron) you deal with the world in a series of absolutes.  Mammals have hair.  If Mom doesn't have hair, she can't be a mammal.  Well, Cathy lost her hair and Aaron looked forward to the day that his mom would become a mammal again.

Cathy is now more of a mammal than I am.  While still a little thin and fine, her hair is longer than mine.  She's a little sad that she has to shave her legs again because the hair is growing everywhere else also.  Tradeoffs.  It's not enough hair to style or go out in public, or keep her warm, yet, but it's hair and it's there.

Cathy had one last (probably) fill in her expanders last week.  She was told that she is "out of vertical skin."  Which basically means that her skin can't stretch anymore and her chest will be pretty much the size it is now.  She's ok with that, because she fits into her old bras pretty comfortably.  After she's had her exchange surgery and all the healing and swelling is resolved, she's looking forward to bra shopping again.  As I understand, finding just the right bra is often as difficult as...well, a lot of things.  

In profile, Cathy looks about like she did when we started dating almost 20 years ago.  She's about 10 pounds lighter and her chest is as hard as a rock, but she looks pretty normal (which translates to beautiful).  It will be interesting to see how things change with the exchange surgery.  I'm predicting and hoping that much of her chest discomfort will disappear shortly after the exchange, simply with the placement of a softer, permanent implant.

Neuropathy has returned in the last week.  Cathy's lower left leg and foot are painful.  This pain is a little disheartening since it comes at the same time that she's worked her way down to taking Tylenol only at night for her chest pain.  As we've come to expect, some good, some bad.

I don't believe in coincidence

This post has a title, whereas I don't believe any of my other posts possess one. It's a meaningful title for a (hopefully) meaningful post. Tonight I had composed a rather lengthy entry on the iPad. I created a new tab so that I could attribute a quote to the correct person. When I returned my post was gone and no draft was saved. Coincidence - I don't believe so. Overdramatization is not my intention here, but I do believe that God guides us daily, particularly in the important times of our lives. I also don't intend to unpack a theological treatise that I don't really understand, nor do I intend to spark a debate. I just believe that within the framework of free will that God has given us he also places us in times and places with specific people because he wants us there. In short, I believe there is purpose for our situations. 

The quote that I was searching was "never let a good crisis go to waste."  I found that this quote is generally attributed to Rahm Emanuel, whose political positions are irrelevant at this time. This quote is also associated with Albert Einstein, Hillary Clinton, and somebody from the 15th century whose website caused safari to crash and not save my other post. I like this quote, though, because it provides hope in a time of difficulty, especially when we feel powerless. When I think of crisis I think of pain, suffering, trauma, chaos, doubt, fear - things that we all feel from time to time. From crisis, though we can also embrace the transformative power of opportunity and the comforting knowledge that we are exactly where God wants us, when He wants us there, and with the people He wants.

Don't think for a moment that I want or welcome crisis. To the contrary, I think my heart could do with a little less crisis at the present moment. However, the crisis that we experienced starting at the beginning of this blog, when Cathy was diagnosed with cancer, has opened the doors to tremendous loving opportunities that I would have otherwise missed. It has provided for a reshaping of my life and the organization of our family that will be more in line with what I believe God wants for our family. 

I don't know where to go with this next and it is not a coincidence that Cathy just told me how tired she is. Therefore I will stop. Perhaps I will have more on this later. Maybe not. There is plenty of crisis going around right now for everyone to cultivate their own thoughts with my little seed. 

This post is not about Cathy.

Today, my friend, Sammy, will lay his wife to rest.  She was only 33.  They were married barely a year when she began her battle with cancer.  She fought for seven years to the day of her diagnosis.  Her body gave up the fight, but her spirit didn't.

My heart and prayers have been with them for a long time.  They have both been an inspirational vision of strength and grace.  In their simultaneous careers as music teachers they reached thousands of students in addition to their friends and family, as we all collectively watched their struggles, ultimately powerless to change the outcome.  We've all learned from them the power of being positive and loving others.  These lessons will extend through generations thanks to the connection of so many young people to Sammy and Stephanie.

Being inspired by positive people doesn't make us immune to negative thoughts and negative situations, though.  It is a constant struggle that goes back and forth.  It's almost like a tug of war.  Sometimes I feel myself at the edge of the mud, peering over and feeling the momentum moving the wrong way.  It is at those moments that I feel the tug of my teammates behind me, pulling me away from the pit.  I relish the day that I watch the negative side fall face down in that mud.  We probably all feel this way at times.  Sammy and Stephanie have taught me to trust my teammates to pull me when I can't pull myself.

I've thought of Sammy a lot the last week.  How hard it must have been to have held Stephanie's hand as she drifted away.  How hard it must have been to bring her back to Ohio and enter his home without her.  How hard it must have been to stand beside her motionless body as he greeted the hundreds who came to pay their respects.  How hard it will be to see her lowered into the ground today.  He smiles.  He lives.  He gives.  He loves.

Cathy is Sunshine

Cathy is sunshine.  There are things that get her down a little from time to time, but she is sunshine anyway.  The pain is constant, the drain is an annoyance, she desperately wants to pick up Clara, and she loves hugs (which she can’t give).  Because I know her I can see that these things bother her, but she quickly pushes them aside through faith, love, and general cheerfulness.  She is the best person I know.

The left expander seems to be holding fluid adequately.  If the expander continues to do its job she will have surgery on Friday, January 4 to exchange the expanders for permanent implants.  All indications this week are that this plan will be a go!  She is down to one drain after starting with four.  This drain is only producing 20-25 ml of fluid each day.  Dr. Butterfield wants to remove them when they produce less than 30 ml in 24 hours, so I would anticipate the removal of the last drain tomorrow or Thursday at the latest.  Having this last drain removed will be a big boost for Cathy.  The drains are a pain - physically, mentally, and emotionally.  They are cumbersome, painful, annoying, a threat for infection, and a hindrance to clothing selection.

Cathy’s pain is under control, but definitely present.  Even though she is able to sleep longer stretches it still wakes her up from time to time.  She describes the pain as similar to the engorgement that came from the cessation of nursing Clara overnight.  It is a blessing, though, that she says the pain is less than that of the engorgement.  While the next surgery will surely bring a little more pain, from the description by Dr. Butterfield and her physician’s assistant, it will be a relief from the expanders in some ways.

Sometimes we take steps forward, sometimes we take steps back.  Usually, we have a net gain in forward progress, other times we remain stationary.  Cathy had her third drain removed yesterday at the plastic surgeon's office.  That's good news!  Drains are ok, but they are kind of an inconvenience.  Speaking of inconveniences, Cathy has a leaking expander.  Her right expander is doing its job, holding fluid and stretching the skin and muscle to prepare for a permanent implant.  In the last fortnight, the left expander has gradually lost volume until it was empty and slightly buckled, much like a deflated soccer ball.  It was originally filled with slightly more saline than the other side, so to see it so much smaller made its malfunction a certainty.  

Dr. Butterfield was ill with the flu and thankfully didn't attend her office hours yesterday, so we saw the physician's assistant, Kristin.  Kristin conferred with Dr. Butterfield by phone and they decided the best course of action was to fill the left expander to see how fast the fluid is exiting.  If it is a slow enough leak, the plan is to fill it every week or so instead of every other week, then make the swap for the permanent implant early in January instead of late in February.  If the leak is too fast for that it will likely need to be replaced sooner.  

It was explained to us that there is a kind of no-man's-land for follow up surgeries.  Cathy is currently in that no-man's-land at 15 days post-mastectomy.  If a second surgery is pursued within 7-10 days of the initial surgery, the tissue hasn't begun the healing process in earnest yet and can defend itself against infection and excess bleeding.  The same is true 5-6 weeks after the initial surgery.  In between week 2 and week 5 the tissue is healing and building new blood supplies, making it difficult to work with.  So, we're hoping that plan A works and we don't have to think about plan B and C.  We'll go back tomorrow for an evaluation and hope that we can continue down the path of frequent saline injections.

I am thankful for Cathy.
I am thankful for the healing God has done in her body these last months. 
I am thankful for four loving parents in various states of retirement who help us when we have have cancer, or torn ACLs, or new babies, or food poisoning, or other things. 
I am thankful that those same parents are a beautiful example of love for us and for our children. 
I am thankful for great friends and neighbors who are steadfast long beyond any reasonable amount of time. 
I am thankful for good food on Thanksgiving and many other days of the year. 
I am thankful for three amazing kids. 
I am thankful for job flexibility. 
I am thankful for God's grace, forgiveness, and presence. 
I am thankful for time with my family. 
I am thankful for the ability to find peace. 
I am thankful to live in a country where we have only known freedom and peace on our soil for 150 years. 
I am thankful to live in this neighborhood. 
I am thankful to have found true love. 

Cathy continues to amaze me.  It hasn't been a week since her surgery and she's weened herself off the Percocet.  I don't think she made this move because the pain had decreased at all.  Instead, I think she was tired of being in a fog all day from taking Percocet and Valium.  She's continuing on the Valium because some of the muscle spasms are still pretty intense.  Of her four drains, only one is producing a consistently large amount of fluid.  Another produces a medium amount and the other two yield barely enough to measure.  Hopefully, two of those will be removed today when we see Dr. Butterfield.

Yesterday we apparently missed an appointment with Dr. Manders that we didn't know we had.  There must have been some sort of mix up with the nurses and the discharge papers and who was going to call whom.  Dr. Manders called Cathy yesterday to find out how she was doing and give her the pathology results.  She said that the pathologists couldn't find any traces of cancer in the tissue that was sent out.  Dr. Manders referred to this state as a "complete pathological response."  Those are three pretty sweet words.

This entry is dated Wednesday, November 14.  Apparently it didn't post from my iPad while at the hospital.  The previous entry is one I just typed on Saturday, November 17.  Now I know why people don't feel informed.  My apologies!

From our window we see the day breaking on Price Hill, Union Terminal, Fairmount, and Bellevue Hill Park. It's beautifully sunny, but the rising vapors tell us that it is a very cold morning. Cathy and I spent the night in a room by ourselves. It didn't start that way. From recovery, Cathy was brought to a shared room. A shared room is not a big deal, however, Cathy's roommate was a smoker, as were her visitors. The smoke smell was pretty overwhelming. Cathy did not complain about the smell, but she was a little bothered by the extremely loud profanity and the incredible amount of uncovered coughing that was going on.

Now, I'm normally a "roll with it" kind of guy, but all of this was a little excessive and would have been detrimental to Cathy's recovery.  Cathy would have been proud of me if she were a little more coherent because I was very persistent and insistent that she be moved. It worked!

Cathy slept a little. Her pain is pretty high right now. Those of you who know Cathy know how the extent of her pain tolerance. She spent most of the night at an 8. Valium helped to relax her muscles and made her tired. Dr. Manders made a surprise visit this morning (she said that she would be covering Thursday and Dr. Butterfield today) and confirmed that Valium would be the best way to go for pain management. Cathy's morphine button doesn't help much, but Valium relaxes the muscle spasms that are causing her pain. We're both all for less narcotics, too. Cathy has accepted the offer of higher Valium doses at greater frequency and has put her morphine button to rest. Hopefully, she will be able to sleep a little more and get up and walk around later today.

Captain's Log - Stardate 1117.12

The Enterprise has passed through Sector 1 of the Galaxy Cancer and has encounter some turbulence in Sector 2.  In Sector 2, aliens briefly abducted her body and made some alterations to her physical and mental makeup.  Since her abduction she has been wearing a very tight fitting white bra that snaps and zips in the front.  It conceals two silver sponges made of antimicrobial material that cover the areas of alien experimentation.  All of that is covered in a clear adhesive material that is pressed tightly to the skin of her chest.  On either side of her chest they have inserted tow tubes, totally four tubes.  The tubes transport blood and lymphatic fluids from under the clear dressing and deposit them into four clear colored receptacles that resemble grenades.  The grenades are pinned to the bra and are collapsed so as to utilize the power of negative pressure to draw the fluids out of her body.  The aliens intend to assess the amount of fluids that are extracted from her body over the next several weeks.  The aliens also inserted two tubes into her back through which non-narcotic fluid flows directly into her spine.  There are two dials that allow Commander Cathy and the crew of the Enterprise to adjust the rate of flow of this non-narcotic fluid.

The aliens seem to feel some remorse regard the non-narcotic nature of the fluid flowing into her back.  Therefore, they have placed her on a regimen of Percocet and Valium that have assured that they may continuously control her mind.  Commander Cathy and I have had a collaborative relationship with regard to commanding the Starship Enterprise over the last 15 years.  The substances the aliens have placed in the Commander's body have made collaborative command of the ship difficult.  On many occasions our conversations regarding care of the crew and battle plans have been repeated, with Commander Cathy having no recollection of our previous conversations.  This has put a strain on the ship, but control is adjusting - I just have to remember that the Commander may or may not remember our plans.

While Sector 1 of the Galaxy Cancer left Commander Cathy with no hair on her scalp, only a few dozen eyebrow hairs, and eyelashes numbering in the single digits, Sector 2 has brought on the growth of many short, soft hairs on her scalp and three tiny new eyebrow hairs.  The alien experiments in Sector 2 may have left her in a reasonable amount of pain, with some physical discomforts, and with a very cloudy mind.  However, we are grateful for the benefits that have come from our exit of Sector 1.  I am pleased to report that all of the side effects of the alien experiments on Commander Cathy are of the sort that are to be expected.  The side effects are not fun, but none of them are out of the ordinary.

Commander Cathy, the crew of the Enterprise, and I are looking forward to passing through Sector 2.  Sector 3 promises to bring much more optimism, especially since the other side of Sector 3 is the outer boundary of the Galaxy Cancer.  After leaving Galaxy Cancer the entire crew is anticipating the exploration of Galaxy New Life.

Cathy made it through a very successful surgery!  We were expecting a four hour surgery, but after just a little over an hour my pager vibrated. Christ Hospital surgery pages waiting families much the same way a hostess at a restaurant would call waiting patrons to their tables.  They even use the same kind of dual purpose pager-coaster. If it wasn't so early in the morning I might have wished I had a pint to set on my pager-coaster.

Dr. Manders told me that Cathy's surgery went very well and that her tissue looked very good - no visible signs of cancer elsewhere. Much like the biopsy, the pathology report on the removed tissue will tell the full story. Dr. Manders said that Dr. Butterfield had already begun her work and that they had worked side by side for a while.

After leaving the consult room I made some phone calls and texts. I returned to the waiting area and after reading only a few paragraphs of a book the pager rang again. Dr. Butterfield finished in just over two hours total surgery time. Dr. Butterfield expressed cautious optimism. She said that Cathy's tissue was in great shape, but with neoadjuvant chemotherapy she never feels completely at ease until after three or four weeks. At that time she will know how well the tissue has healed. Up to that point it is difficult to tell how that tissue will respond in terms of circulation and infection defense.

Cathy is in a room with a nice view of the winding Ohio river and some trees clinging to their fall colors. She has some pain in her chest, but is doing well otherwise. Her pain is at its greatest when she takes a deep breath.  She is speaking coherently, although quietly.  Thank you all for your prayers and well wishes!

I'm back in the Christ Hospital surgery waiting room, blogging from the iPad and hoping I don't have too many iPad related typos. Cathy just went back for surgery.  We had about two hours of prep before they rolled her down the hall to the OR.  She dressed in typical gown wear with some very fashionable tights to prevent embolism.  An IV was started with saline.  They checked her potassium since it was low prior to her biopsy.  We were very happy that it had gone up to 3.5 from 3.2.  Dr. Manders and the anesthesiologist feel comfortable with anything over 3.0, though.  The nurse gave her a sedative, then the anesthesiologist came in to insert the transvertebral pain pumps.  These devices consist of two regulators that are attached to a medicine supply. The regulators deliver the medicine directly to her spinal cord through two catheters placed about an inch and a half on either side of her spine. It works in a similar fashion as an epidural, but since it is between her shoulder blades she will be able to walk and will manage the pain in a very localized area.  We expect about two hours of mastectomy and two hours of reconstruction.  Cathy has been very brave, calm, confident, and predictably chatty throughout all of this.  She is a marvel.

The last couple of days have been full of good news!  Throughout these months I've been telling myself not to get too high or too low, just even keeled.  Although the Goodness of these days has been Great, it is tempered by the knowledge that in one week things are going to get much more difficult.  Even keeled.

My last post was pretty short, but got the point across.  Even though I was really tired at the time of that post, I thought it was important to communicate that information!  We had an followup appointment with Dr. Manders today that confirmed, indeed, that all of Cathy's lymph nodes were negative for cancer.  Dr. Manders thought she took out 6 lymph nodes, but it turned out that one of the nodes was actually four little tiny nodes clumped together.  That means that 9 lymph nodes were clear!  No cancer in the lymph nodes means no radiation.  No radiation means reconstruction at the time of mastectomy.  Reconstruction at the time of mastectomy means a shorter road to recovery.

All this talk of mastectomy and reconstruction points to the appointment we had with Dr. Butterfield, the plastic surgeon, yesterday.  Dr. Butterfield has apparently been told of the node pathology because she greeted us with, "So, good news!"  We talked through the reconstruction and learned a little more about the drains, the expanders, the recovery time, and other details.  We were excited that we could talk about Plan A, because there was to be no radiation.  Dr. Butterfield told us that Dr. Manders would take about two hours, then she would come in for another hour and a half to two hours.  We were thankful that there wouldn't be a longer time of anesthesia.

On the way home we talked about our conversation with Dr. Butterfield.  The surgery time seemed short to both of us when considering all the work she had to do with the latissimus flaps and the reconstruction.  Dr. Butterfield had also talked about expanders and I told Cathy that I didn't remember expanders being necessary in an LD flap reconstruction.  We were both beginning to feel a little confused.  I asked Cathy to call today to make sure that LD flaps were still the plan - so we're all on the same page.

Cathy called and Dr. Butterfield told her that LD flaps were her radiation plan!  She thought LD flaps would be important for a good result to compensate for the damage that radiation would cause the tissue.  Given Cathy's healthy body and having plenty of skin, she said that expander and implant reconstruction would be much preferable to LD flap reconstruction.  Thus, the shorter surgery time AND Cathy is super excited about not having two surgery sites to heal!

Lots of good news, but still a hard road ahead.  Cathy is tough.  Good news item #3 - peach fuzz.

Sooooo......lymph nodes are clear.

Cathy is pretty sore, but she's doing well.  She's worked her way off the percocet and is just taking tylenol now.  She has a little numb place on her back just behind her armpit. She read that sometimes nerves can get damaged in a sentinel node biopsy.  We aren't too worried about it, though because everything is going to get rearranged in about a week anyway.  

On an amusing note, every time I've gone to the bathroom the last few days I've felt like I was on an airplane.  Dr. Manders said that the blue dye might cause Cathy's urine to be "a little bluish-green."  However, it's been a hilarious shade of bright blue that looks just like an airplane toilet.  It gives me that "I'm going somewhere on vacation" feeling.

Cathy made it through round 1 of surgery very well today!  She is upstairs resting now, having just mild pain.  That pain should probably ramp up pretty significantly tomorrow, though.  Dr. Manders made just a small incision under her armpit, but said that she went in deeply through that incision and pretty close to the chest wall.  The blue dye and the radioactive dye both tracked well through her lymph system and Dr. Manders was able to identify 6 lymph nodes for extraction.  She called the lymph nodes "tiny," which is a good indication, as heavily infected lymph nodes are generally larger.  She did caution, however, that there is still a possibility of isolated cancer cells within those lymph nodes.  We will know the outcome of the pathology on those lymph nodes on Monday, probably.  In the meantime, Cathy is going to rest and heal.

We arrived at Christ Hospital this morning at about 6:30. Cathy has been her usually calm and brave self, although I can tell there is a little underlying apprehension. This is different than when she had her appendectomy. There wasn't time to think about that surgery. She's been think about today's surgery and the upcoming mastectomy on the 13th for months now. She didn't sleep well last night. I, on the other hand, had a great night's sleep thanks to my mom caring for Clara. I know she's concerned and those thoughts are weighing on her. As for me, exhaustion is an amazing sleep tonic. 

The little scalpel on the tv screen tells me that Cathy is "open".  The screen is almost like a status board at the airport, giving name coded information about each patient. Cathy is EW..G, C. The screen indicates that she entered preop at 6:43 and the or at 8:07. The scalpel just popped up. The anesthesiologist thought that we would be home by noon as long as she responds well to anesthesia. I'll make another post when we return home. 

On this last day of Breast Cancer Awareness month I have some thoughts from the perspective of a breast cancer husband.  Here are my top five thoughts that women our age or older should NOT have:
5. I'm not old enough for a mammogram or breast exam.
4. It can't/won't happen to me.
3. I breast fed so I'm not at risk.
2. I'll do it tomorrow.
1. I'll wait and see if it goes away.
Even though it is almost the end of Breast Cancer Awareness month, I now live Breast Cancer Awareness life.  Take care of yourselves.

When I was in the shower this morning I thought of about 5 really important things to include in this post.  Now that I'm out of the shower and the day has passed, those thoughts have passed also.  Whenever we forget something, we are urged (by whom I do not know) to return to the point of origin for the thought.  Aaron is currently in the shower now, so I'll do it metaphorically.  

As I reached for the soap this morning I saw three eyelashes on the wall and one on the soap.  I know Cathy will be mortified that I'm sharing this, but I hope that through my sharing I will elicit some prayers and she will feel my love for her.  On an aside, there are so many things that she's asked me not to share.  I have honored them all.  She did not ask me to hold back on this - mostly because we haven't talked about it yet.  Cathy has been trying so hard to hold on to her eyebrows and eyelashes for as long as possible. She knew it wouldn't be possible to preserve her hair, but she has thought that maybe she could retain some eyebrows until the new hairs began to grow.  She's done a great job.  While she has clearly lost 90% of her eyebrow hairs, she has been careful in drying her face and other womanly facial maintenance to keep at least an outline of eyebrows.  

She's really not caught up in the whole beauty factor part of things.  Of course, she would have preferred to keep her hair and all other normal features that make her attractive.  Cathy has been very noble and not self-conscious about the changes in her appearance.  As an example, she has worn her wig with some frequency.  She wears it, though, to make others more comfortable, not because she wants to look more beautiful than if she wore a bandanna, hat, or scarf.  She has proclaimed herself a "bandanna girl" just because it is so much more comfortable than a wig.  In a similar way, she has wanted to keep her eyebrows, not for beauty's sake, but because she feels that if she loses them she will "look sick."  Just as she hasn't given in emotionally, or even to some extent physically, to the side effects of treatment; she doesn't want to look sick.

I think she's going to begin growing hair by Thanksgiving.  I hope she begins to grow some eyebrows by then, too.  She doesn't have many left.  She has even fewer eyelashes.  I'm sad for her - not because she feels ugly, not because she is unattractive to me, but because she doesn't want others to feel uncomfortable because she looks sick.  Also, I feel sad for functional reasons.  She gets stuff in her eyes because the eyelashes don't keep it out.  Her nose runs because there's no hair to keep the mucus inside.  She's so sweet, loving, and thoughtful of others that she doesn't complain, but I know those things bother her.  I'm glad the chemo is over.  Let's go hair!

I will close with a question.  So, for those of you keeping track, I've only remembered two of the five important things I thought of this morning.  This question is for the ladies reading.  There are only three days left in October.  That means the end of breast cancer awareness month.  Have you had or scheduled your mammogram/exam this year?

There hasn't been much new information to post in the last few weeks.  Cathy has thoroughly enjoyed not having chemo this week.  She has been feeling pretty good in terms of energy and nausea.  Every once in a while she'll make a scrunched-up face and say, "Ew, I just tasted chemo."  

The big issue currently is leg and foot pain.  It seems like it might partly be peripheral neuropathy, but it could also be that gravity has just made the toxins from the chemo pool in the lowest area possible.  The oncologist said that leg pain is common amongst chemo patients at the end of treatment and afterward.  I give her massages almost every night, sometimes a couple of times.  She's also gone to have a professional massage.  Cancer Family Care has hooked her up with a masseuse specifically trained for cancer therapy.  We're hoping we can get a prescription written for massage so insurance can cover it.  The massage seems to provide some temporary relief for her, but it appears the pain is a lingering pain.  Hopefully, it will diminish over time.

We know and feel the thoughts and prayers that so many of you are sending our way.  Thankful doesn't begin to scratch the surface of what we feel.  We feel very loved and cared for by all of you and by Him.

Guess what Cathy's doing tomorrow?

Not going to chemo!

Cathy wasn't sure she would be able to finish the walk today, but she made it all the way without a hint of fatigue.  She did say afterward that her legs were tired.  The route for the American Cancer Society Making Strides for Breast Cancer walk started at Yeatman's Cove and headed west toward Paul Brown Stadium.  After a northward jaunt on Central Avenue and Elm Street we made our way past Fountain Square via 5th Street.  We crossed the Purple People Bridge into Newport where we could see how enormous the turnout was for this event.  We thought we were at the end of the group because we could see a long string of people on the levy as we were crossing the bridge.  When we looped down and back under the bridge we could see that the entire bridge was full of people who were still crossing!  There must have been at least 5000 people there today.  We crossed back to Ohio over the Central Bridge and returned to Yeatman's Cove.  It was inspirational to see so many people supporting breast cancer patients, survivors, victims, and awareness.  At last glance the event raised over $300,000.  That's pretty cool.

The greatest inspiration for me was Cathy.  Our team of friends and family had a great time chatting as we walked the 5.5 miles in almost 2 hours.  All the conversation kept Cathy focused on the wonderful people who were part of the walk instead of her fatigue.  Nearly two weeks after her last chemo treatment she doesn't feel bad any longer, just more tired than normal.  She also gets worn out a little faster than she would have before this all started.  She was the only bald lady I saw in the event.  I was proud and honored to walk beside her.  

The geeky me tracked it on strava.  http://app.strava.com/walks/24998288  

Wednesday was a good day for us.  We had an appointment with Dr. Manders and we had a date.  Dr. Manders was pleased with Cathy's tumor response and optimistic about a successful surgery.  Like many of Cathy's doctor appointments, we were presented with many options.  With Dr. Manders's guidance, we have a plan that we feel confident is a best path if everything goes the way we hope.  We both appreciate Dr. Manders's demeanor, logic, knowledge, and communications.  All of those factors increase our confidence.  

On Thursday, November 1, Cathy will have a sentinel node biopsy in which she will be put to sleep and a blue dye and a radioactive marker will be injected into her breast.  They will follow the dye and the marker to the sentinel lymph node and remove the first 3 or 4 lymph nodes that the dye and marker encounter through a small incision under her armpit.  If lumpectomy were an option or according to an aging standard of care, frozen sections of the nodes would be analyzed under a microscope to detect the presence of cancer cells.  At that point an axillary lymph node biopsy would occur if there is cancer in the nodes with the previous standard of care.  Knowing that Cathy is going to have a bilateral mastectomy regardless of those results (because of the BRCA 1 gene mutation), Dr. Manders would prefer to send those lymph nodes out for a more detailed analysis to detect even isolated cancer cells in the lymph nodes.  This pathology takes a few days rather than a few minutes, but can determine with greater certainty the presence of cancer in her lymph nodes.  This information will determine the course of action for her mastectomy on Tuesday, November 13.

On Tuesday, November 13, Cathy will have a mastectomy.  If the lymph node pathology shows no cancer cells, this procedure will be a lengthy bilateral mastectomy followed immediately by a latissimus dorsi flap reconstruction.  This is what we're hoping and praying for.  If the pathology shows even one cancer cell, Cathy will instead have a right breast mastectomy.  She will then go through a course of radiation on the right side.  Once her tissue has recovered from radiation, she would undergo a second procedure that would begin with a left breast mastectomy followed by reconstruction on both sides.  This is the less desirable option.  Either way, cancer loses.

After the appointment, we had a nice dinner date at Enoteca Emilia in O'Bryonville.  I highly recommend this place for blog followers in the Cincinnati area.  It was a fantastic meal - the first we can remember having together without our children, or not in a hospital, or not accompanied by 250 of our closest teenage friends, in at least a year.  We shared most of our food, which included:

Shitake mushroom and arugula salad with butternut squash sformato
Garganelli pasta with mushrooms, oregano, and truffle
Lamb skewers (mostly for me) with fingerling potatoes, red onions, and rosemary
Roasted brussels sprouts with shitake mushrooms and balsamic

All the food was out of sight and it was even better to be able to celebrate the end of chemo, Cathy's birthday, and the ability to have a focused face to face conversation about whatever we wanted.  It also felt good to have some dates in place.  We've known pretty well what was going to happen to Cathy, but having firm timing makes things a little more concrete and real.  Scary and hopeful all at the same time.

I could have sworn I posted last week, but as I look back I can see that I didn't.  Maybe I just thought a post (or several posts) and never actually typed them.  Dr. Drosick expressed his satisfaction with Cathy's tumor response again.  He predicted a successful surgery and gave his blessing for that to occur any time after 3 weeks has passed.  Cathy's neuropathy concerned him enough and he felt good enough about her tumor response that he reduced her taxotere dosage by 50% this time around.  We asked if that was what was causing the neuropathy.  His response was, "Who knows?"  We've appreciated his honesty about the mysteries of chemotherapy and his forthrightness about his take on the current research.  It's too bad Cathy started chemo before all the news reports about the genome sequencing and the linking of triple negative cancer to basal cell types.  It would have been interesting to hear his thoughts on the use of chemo drugs used for ovarian cancer used for TNBC instead of the more toxic anthracyclines that Cathy received.  I'll have to keep up with those aspects of the research to see how all of that develops in the future.  Maybe it means another avenue of chemo treatments for TNBC relapse victims when it was previously thought that a relapse was nearly indefensible?  I suppose only time will tell.

While we'll never really know if it was the taxotere that caused the neuropathy, we can guess that it was one of the drugs that made her feel more terrible - maybe even more than the others.  This time around, Cathy was down and out on Tuesday night and all day Wednesday, like usual.  On Thursday, though, she was up and about for several hours and ate at least two meals in addition to various snacks.  This is not typical!  Friday she was awake almost all day and she had almost a normal weekend, with a little fatigue, but a normal appetite.  Neuropathy is still a problem.  Maybe that means taxotere wasn't the culprit, but it still might have been.  Certainly she felt better sooner with a reduced taxotere dose, though.  Duh!  Less poison, less misery.

Cathy has an appointment with Dr. Manders on Wednesday.  At this appointment we will outline and schedule the biopsy and surgery.  It will be nice to have some set dates so that we can anticipate what the months of November and December might look like.  Cathy and I are planning a dinner date after that appointment.  We will celebrate the end of chemo and her birthday all at once!

This is part 2. Go back for part 1.

Tomorrow is Cathy's last chemo treatment!  We are really happy about that!  Tonight I told the family that I don't want any more chemo, but I'm really enjoying the Sunday-before-chemo family meals.  This has been a long and difficult three months.  We are ready to close this chapter and move on to the next phase.  Chemo has been like a slow burn.  I anticipate that the next chapter will be much shorter, but far more furious.  We are so grateful for all the people who have supported us in so many ways in the past three months.  We are thankful to our families and neighbors who have dropped everything to help at a moment's notice, to friends who have baby-sat, to friends who have organized help, to people who have cooked for us, who have cleaned for us, who have driven us or our children someplace, who have sent cards, who have walked for us, who bought Willow House products or donated, who tied a pink ribbon on a tree, pole, fence, or body part, who have said a kind word, done a kind deed, or prayed for us.  We are so blessed and so thankful.

At tomorrow's appointment we will put the survivorship plan in place and begin to schedule surgeries and other diagnostics.  The survivorship plan will be a protocol of procedures that will further eliminate cancer from Cathy's body and monitor its absence. We aren't sure all that it will entail, but I know we will have a raft of questions tomorrow.  After tomorrow's appointment and a few phone calls we will have a better idea of when the sentinel node biopsy and mastectomy will be and what the next few months will look like.  We feel like we have a good team put together.  References, research, appointments, and good ole gut feelings have led us to four doctors who will help Cathy continue to fight and recover.

Tomorrow will also include questions about Cathy's peripheral neuropathy, which faded a bit two cycles ago, but has come back stronger.  She is having tingling in her feet, considerable pain in her hands, peeling skin in both places, and a twitchy left eye.  Your prayers for help with these symptoms and for guiding the doctor's wisdom in dealing with them would be greatly appreciated.

Thank you for reading through two long posts.  The thoughts and words have been building up.  Getting them into the computer has been another issue.

I've had a post rolling around in my head since Thursday afternoon.  Clara developed a fever Thursday night.  I took care of her all day Friday, trying to spare Cathy from the germs.  Saturday she looked a lot better and enjoyed going to the second half of Jonah's double header (I got to experience the full 5 hours myself).  Then she woke up last night all chokey and wheezy.  Lo and behold, we think it's croup.  So, she was a little fussy and low key today for her 1st birthday party with both sets of grandparents and Addie and Michael.  We uninvited Corby, Emily, and Asa because we didn't want to take a chance with Asa and croup.  We're hoping that this passes quickly and we don't have any of the same kinds of croup scares we had with Aaron.  She's sleeping comfortably now and the boys are getting tucked in so I can steal a few minutes to write.

Cathy felt very comfortable with the plastic surgeon, Dr. Butterfield, at Thursday's appointment.  She is very personable, knowledgeable, intelligent, and it is easy to see that she is an artist.  The information we gathered at the appointment left us with plans A and B, contingent upon the need for radiation, of course with subplans for each plan.  Dr. Butterfield preferred (as did we) to be optimistic and work through plan A, which is what we do if no radiation is needed.  

Plan A.1 is to have reconstruction at the same time as the mastectomy with expander implants.  The expanders would be filled periodically over the course of 4-6 months to grow the muscle and skin, then they would be replaced by permanent implants.  Permanent implants generally last 10-20 years, but can last much longer, before they will need to be replaced or maintained.  The upsides of this surgery are that there is only one surgery site and one recovery site.  The downsides are that there is a greater possibility of infection and healing issues than the other options and that there is more scarring.

Plan A.2 is to have reconstruction at the same time as the mastectomy using latissimus dorsi flaps and small implants.  The LD flaps are flaps of muscle and skin that are cut and pulled from just under the scapulas on Cathy's back and brought around to the front to create new breasts.  The upsides of this surgery are that there is less possibility of infection and healing issues because there is a blood supply brought around with the flaps.  Also, there is less scarring.  The downsides are that there will be two surgery sites and Cathy would experience some numbness in her back at the point where the flaps were taken in addition to some permanent muscular weakness in her upper back.

Plan A.3 is to wait 4-6 months after the mastectomy and choose either of the above reconstruction types.  The upsides of this are that infection and healing issues are nil because Cathy's immune system will have returned to near normal.  The downsides are that it is a longer time, more surgeries, and more scarring.

At this point Cathy is inclined to go with Plan A.2.  Plan A.2 presents a reconstruction that tends to be more successful in terms of healing and healthy, as well as a more aesthetically pleasing result.  She is concerned about having two surgery sites and about the numbness, but feels that the lower rate of infection or healing issues far outweighs the other consideration.  She is concerned about infection and healing issues with plan A.1 and doesn't want to wait for more surgeries with plan A.3, knowing that she has an oophorectomy coming up sometime in the future.

Plan B, and all subplans within plan B begin with a right mastectomy, radiation, and then a left mastectomy and either plan .1 or .2.  We're hoping that we don't even really need to think about plan B.

This has been a long post and I have more to write.  Join me in about 30 minutes for part 2.

During the last few days I've been thinking about how I've made a lot less blog posts in September than in June, July, and August.  I've never been a journal keeper, so I suppose that I should be pleased that I've managed to write anything even once monthly during four consecutive months.  Part of my slow postings is due to less information to share than at the beginning of this crazy adventure - that's about to change.  Another part is that the emotions of the situation have stabilized a bit.  That's not to say that I'm still not sad, scared, angry, etc.  It's just that I've had some time to adjust to all of those feelings and I'm a little more used to them now.  I suspect that they will continue to resurface from time to time.  Since school started there is just less time to think and write, and less energy to do either.  I'm doing less, Cathy is doing less, and the boys are doing less in terms of activities than we've done in many years.  Still, the routine of school, homework, music lessons, swimming, baseball, and the like takes more time and energy than in the summer.  My mind is pretty well occupied with all of that with little room for anything else.  And then there is Clara.  It's easy to think through an entire evening's plans, get it all worked out, and then remember that I need to feed a baby and make sure she's sleeping.  It's a joy every time, but I forget sometimes that there is one more person to care for than in the previous 9 years of my life!

Tomorrow we meet with the plastic surgeon for the first time.  I think we have our questions all lined up, but I'm sure it will be a steep learning curve anyway.

I'm overdue on posting again, but here we are.  On Thursday, we had an appointment with another radiation oncologist.  This doctor is in Blue Ash and does treatments at her office and at Bethesda North, both of which are much nearer to us than Christ Hospital.  She gave us hope, however fleeting it might be, that we won't need her services.  She seemed to think that there might be a good chance that no lymph nodes will contain cancer.  Hopefully, this will be conclusively shown after the sentinel node biopsy, meaning that Cathy can forego radiation altogether.  

This doctor shared the same view as the head of research at the American Cancer Institute that if no lymph nodes are involved then the benefits of radiation do not outweigh the risks.  She did believe, though, that if even one lymph node shows cancer, that radiation would be a worthwhile treatment.  She told us that when even one lymph node is involved that research shows that radiation improves outcomes by 5-10% at the minimum.  This is greater than the 1% chance of a secondary cancer developing as a result of the radiation.  These are numbers we can understand and it's the second time in less than a week that we heard the same thing from sources in whom we feel confident.

Ah, Tuesday!  Predictably, Cathy is feeling noticeably better.  She has done really well this cycle, eating more than previous cycles and having more energy.  Neuropathy is a bit worse than last time and more in her hands, but still not enough for her to take the medicine that Dr. Drosick prescribed.  Cathy was home alone with Clara the last two days and able to care for her with the wonderful mothering love that Cathy expects of herself.  

We will be at an appointment with another radiation oncologist on Thursday.  This doctor was referred to us by Dr. Drosick and is closer to home than the doctors at Christ.  Cathy also had long conversation with the head researcher and chief of oncology at the National Cancer Institute.  She explained the specifics of her case as best she could and they shared with her their recommendations based on their vast knowledge of the current research as it pertains to her particular situation.  They qualified their statements, as they should have, with the understanding that they haven't seen her films or read her reports, but spoke from the point of view of what the research shows.  They seemed to think that radiation would be a good idea if even one lymph node is involved.  If it is conclusive that no lymph nodes are affected they think the risks of radiation could be greater than the benefits.

It will be interesting to see the opinions of other radiation oncologists as we near the surgery time.  In no way do I look forward to what lies ahead for Cathy, but I will be glad to have some additional concrete lab reports and more steps along the path to healing for her.

This round of chemo has, again, been a bit of good news/bad news.  Thankfully, the good things seem to be more numerous than the bad.  Due to Cathy's will power, or the reduced dosage, or some other factor, her energy and appetite have been much better this week.  She was awake for a few hours today, showered and dressed, and ate more than I've ever seen on a Thursday.  She told me she was "just pushing through," but I think it's a little more than that.  The last four rounds I don't think she could have pushed through with all her might.  This round is a little different.

The peripheral neuropathy is still present, but mild.  It hasn't gotten worse, which I count as a blessing.  It doesn't keep her awake and I can usually get it off her mind with a foot rub at bedtime.  Cathy stopped taking her Compazine, an anti-nausea drug, one day earlier than last time (which was one day earlier than the time before).  She thinks the anti-nausea meds make her foggy, so she doesn't want to take them if she doesn't have to.  She keeps them at the ready, though!

Cathy now weighs less than she did on the day we were married.  She looks thin, but not to an unhealthy degree.  She's really only fluctuated 10-15 pounds in the last 15 years, so we aren't really concerned, yet.  I think she's lost some muscle mass.  We're working on increased protein to build muscle and she's walking/doing yoga when she feels up to it.  I think when she feels better on a regular basis some of this will come back.

The big thing this time around seems to be that her thermostat is becoming more and more out of whack.  She goes from sweats to chilly pretty quickly, with most of the time spent in sweats.  This is great for me, especially at night because I'm always the one kicking the covers off, but I wish she could be more comfortable.

Cathy is so tough, so determined, so sweet, so loving.  I hate that she has to do this.

It's been a whole week since I last posted.  Sorry for the delay!  That delay means we had a good week last week - we were too busy for the internet!  We had a guest staying with us who was working with the marching band, I went to band rehearsal Thursday, and we all went to the tailgate and game Friday.  We went to the Miami football game on Saturday, followed by Jonah's baseball game and the marching band competition at Kings.  Cathy wants to do what she can do while she feels like doing it.  She was feeling good, so we did it all!  

Jayne went to chemo with Cathy yesterday.  They said it was extremely crowded, but they got through in a little less time than usual.  Cathy was an inspiration to a frightened triple negative patient who was about to receive her first treatment.  We're hoping that they'll meet again today at the Neulasta shot so Cathy can get her contact information.

Cathy's time with Dr. Drosick led to some good reassurance and a minor adjustment.  Last week the radiation oncologist at Christ said that she could feel Cathy's tumor.  Since that time Cathy has been more aware of it and thought that it might be a little larger, but far less dense than when chemo started.  We were both a little nervous about that.  Dr. Drosick said that he thought both sides felt the same and that she has had a great chemo response.  That's reassuring.  He thought that Cathy might be more aware since that appointment and that since she lost weight that she might be feeling the pressure of her ribs on the breast tissue.  Her weight loss also led to a reduction in dosage for the chemo meds this time - not much, but a slight reduction.  

We're going to enjoy today because Cathy will be tired tomorrow.  We're are all so grateful for the love, care, and prayers from so many people.

Christ Hospital is a tough drive.  The traffic, combined with the hills, curves, and many lane changes in the Mt. Auburn area, is very stressful for Cathy.  The driving made a hard day even harder.  Today we met with a radiation oncologist who we liked very much, but her location at Christ might eliminate her from being part of the treatment.  I think Cathy can handle a trip or two to Christ for surgery or other sparsely timed events, but the regimen of radiation will be too stressful.  Unfortunately, I think Cathy has been the victim of one or two too many traffic accidents that weren't her fault.

The appointment itself was also tough.  While the doctor was extremely knowledgable, had a nice personality, and good bedside manner, the information was difficult to digest.  The doctor felt with 85% certainty that Cathy would need to have radiation.  She also felt that radiation would be a good course of action regardless of the lymph node biopsy outcome.  Because of the triple negative cancer type, the high rate of proliferation, and Cathy's young age, the doctor felt that radiation would give her the best chance of not having a recurrence.  The downside is that having the BRCA1 gene mutation makes Cathy's cell reparation process flawed, increasing her chances for some other kind of cancer that is the result of all the radiation exposure.  I think the percentage is somewhere in the neighborhood of 1-2% as opposed to <1% for BRCA-, but I'm not sure my percentages are accurate (it was a lot of information to process, I know I missed some).

Developing another type of cancer seems to be a common thread in the possible side effects of cancer treatment.  I guess when you're using nasty methods to treat a nasty disease you have to face some other nasty outcomes.  I remember that my nuclear medicine doctor warned me of a 1% chance of leukemia as a side effect of radioactive iodine therapy.  That's was a risk I was willing to take to treat 100% certain thyroid cancer.

We have lots of research to read and we need to get some further opinions before we decide on this one - before Cathy decides on this one.  I feel pretty certain, though, that Cathy won't want to go to Christ five days a week for five weeks, as would be the treatment protocol.  It's obvious, though, that the treatment options and protocols for radiation present a lot more variables than with surgery or chemo.  This makes the decisions much more difficult.

On the brighter side of things, Cathy made an appointment with a plastic surgeon.  The initial contact has been favorable and Cathy is excited (at least as excited as you get when you are lining up for surgery).  The peripheral neuropathy has diminished over the last few days, as well.  Thank you for the flood of prayers.  Hopefully, it will stay mild after this next chemo cycle.

Cathy is tough, but not superhuman.  We're praying for clarity, confidence, and comfort.

This week has taken an unpleasant, but not unexpected twist.  Cathy seems to be developing some peripheral neuropathy.  Peripheral neuropathy is nerve damage that is the result of exposure to toxic chemicals.  There are other causes of PN, but Cathy's particular causal agent is taxotere, which is one of her chemotherapy drugs.  This is a common side effect that we'd hoped she would avoid, alas she has not!  

She feels a little tingling in her hands, especially her right hand, but her feet are the most affected.  Cathy says her feet feel like she's spent all day outside in the snow and then put her feet in warm water.  The sensation is a little numb, a little tingly, and a little burning.  The condition could get worse, stay the same, or get better.  It could go away when chemo stops or linger for a few more months to a year or more.  It's another one of those "everybody has a different experience" things.  If the pain becomes unbearable or it interferes greatly with her sleep they can prescribe some drugs for her.  Tricyclic antidepressants inhibit the nerve function that communicates PN sensations to the brain.  I think Cathy would like to avoid that if at all possible.  There are some other alternatives that may or may not be effective, like acupuncture.

Dr. Drosick said that the next chemo treatment will continue like normal, but if the PN gets really bad he can omit the taxotere in the last treatment.  It seems that these are the things that happen when poisons are placed directly into the circulatory system.

Cathy requests that if you are a praying person that you pray for the PN to improve.  

Last night I was really tired.  I don't have any good reasons or explanations, I was just dragging.  We went to bed about 10:30 and I fell asleep straight away.  Clara woke up about midnight.  I heard her cry and tried to get up, it was just so difficult.  I swung my legs out of bed and sat on the edge for a few seconds with my eyes closed, giving all my effort just to get them to open.  As they finally began to open I saw Cathy walk past and go into the bathroom.  She turned on the water and prepped a bottle.  Without a word, she walked out of the bathroom with the bottle and went to feed Clara.  I turned back to my pillow and slept until the alarm went off at 5:15.  I awoke rested and ready, feeling good.

This little episode made me happy for two reasons. (1) Cathy felt good enough to get up in the night and take care of Clara. (2) I have an awesome wife who knew I was whooped and let me sleep.

Over the course of the last twelve weeks we have been awed, humbled, and inspired by the kindness and generosity of so many people.  We feel very loved and are very grateful.  We have witnessed so much evidence of the goodness of people.  That goodness has been gifted to us over and over again.  Thank you.

This round of chemo seems to be a bit of good news/bad news with a little more emphasis on the good news.  The increased nausea that Cathy experienced in round 3 has not made an appearance this time.  In fact, I've seen Cathy eat more solid food in this round of chemo than in any of the previous three.  That's a good thing.  She will, however, need to tell the oncologist that she has lost 10% of her starting weight.  That was the magic number that when she reached he wanted to know.  I don't know if it will have any effect on her treatment, we'll have to wait and see.

This time around I think Cathy is a bit more fatigued than her other rounds, especially today.  It's hard to say if it's just the chemo or if it's because she was supermom yesterday on the first day of school.  She got up early to see the boys get on the bus and again when they got home.  She worked through all of the first day of school papers and greeted our generous meal provider.  That's much more than she would have done on a typical day 3, so I wonder if she's paying for it a little bit today.  I'm going to anticipate that tomorrow will be mostly a fatigue day with a little uptick in the late afternoon or evening.  Either way, it's been great to see her eat soup, bread, a little meat, and some fruit.  That's much better than broth or nothing at all!

Yesterday Cathy received her fourth infusion of poison, the official point of being more than halfway through chemo.  I did not accompany her for the first time.  Cathy's brother, Jonathan, went with her this time so I could do some work at school.    We've planned for her to go to chemo with other family members for the next two treatments as well.  Being at school and knowing she was at treatment was a little torturous for me, but not nearly as torturous as receiving the drugs.  The treatment room was apparently a little crowded yesterday, so she finally left at 4:00pm after arriving at 8:45am.  Jonathan sent me text updates as the day went along.  His description of events and of Cathy's poise were exactly what I've come to know from Cathy at treatment.  Those messages reassured me and helped me to visualize Cathy's positive outlook, confident patientship, and sunny disposition toward others.  Jonathan kept Cathy comfortable, double checked all of her dosages, and even remembered to give her gum before the port flush so she wouldn't taste saline.

Cathy's day 1 and day 2 have been a great improvement over the nausea that came on early with the last treatment.  She has had a pretty good appetite and higher energy level than I would expect, although as I type here on Tuesday night she is getting a little weary.  Her blood count numbers are all improved over the last treatment, as well.  Dr. Drosick told her she needs a little more protein, which is what Dr. Manders also told her will help her strengthen for surgery.  Tonight we had some tasty grassfed burgers and we'll try to have some extra salmon, beef, nuts, legumes, and protein powder in the coming weeks to get her what she needs.  Oh, that reminds me, nuts seem to be ok for Cathy now.  She has always loved nuts, but lately they have been getting lodged in the back of her throat creating what we've learned are called tonsil stones.  They aren't really stones, but instead accumulations of nut bits combined with seeds and other difficult-to-digest foods.  They aren't a big deal, just an inconvenience that is sometimes a bit smelly.  Last week she had a craving for almonds.  She ate them with no problem.  She ate them the next day and the day after that with no problems.  So nuts are back on the list of good foods for Cathy!  Maybe onions will be next?

The boys are in bed earlier than they have been in two months.  I'll get Jonah up at 5:30 (ouch) tomorrow with Aaron to follow at about 6:30.  We are praying that none of the three Ewing boys will bring any germs home from school that could cause Cathy problems.  She's making such great progress with the chemo - we would hate for that to be derailed by an infection.

Tonight I'll go to bed with a relatively good feeling wife and will likely wake up with a nauseous, fatigued wife.  We'll both remember that the chemo is working and we'll look forward to Tuesday.

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.