Friday, June 10, 2016

School's Out for Summer...Almost

June 10, 2016

As I am stacking chairs and reorganizing files in my classroom the day after graduation, I'm breathing a little sigh of relief.  We made it.  I made it.

Year 25 at Buchanan officially comes to a close today, and it's been a challenging year, to say the least.  I have been out of the classroom far more than any other year, due to the three surgeries I had as a result of my breast cancer diagnosis in October.  Long absences can make it difficult to connect with kids, and I worried about that.  I also worried about the impact those absences had on my keeping up with students' course work and grades.  Timeliness suffered, to be sure.  Instruction suffered as well, as I know what I want my students to learn and be able to do far better than someone else in my classroom, though I definitely had strong substitutes.  We like to believe we are not expendable, replaceable. But this year, whether or not I was replaceable was out of my hands.  Of course I was replaceable.  Classroom life went on in my absence, and it was fine.

It was fine, and it was not.  I felt guilty about my divided attention, and felt like I was swimming upstream for a week or two after returning from each surgery--swimming through lesson plans and make-up work and student questions just to reach the surface.  I was not the teacher I wanted to be this year for my kids.  In the end, however, I have to forgive myself for that, and hope that my kids do too.  Life is about priorities, and this year, attending to my health had to come to the forefront.

This is not to say that I didn't care about my kids; I genuinely do care about them.  I got the opportunity to meet some really incredible people this year in my classes, and I am looking forward to staying in touch with them as they move out into the world beyond our school.  But there were new lessons that that I didn't foresee at the beginning of the year, hopefully for my students as well as myself.  In addition to the curriculum, life threw lessons at us like, "Sometimes life takes unexpected twists; you've gotta roll with it," "Keeping a sense of humor and an attitude of positivity helps to keep us moving forward," and "We've gotta take turns being the priority. It'll all work out for the best in the end if we are patient and cooperative."  I tried to keep these lessons in mind as I progressed through the year, and I think, for the most part, my students did too.

So goodbye to the class of 2016.  You're a great group of kids, and I will miss you dearly.  I'm sorry I could not give more this year, but I am happy we made it through together.  I thank you for your kindness, your concern, and your patience.  Best wishes always!

Mrs. L

Monday, April 25, 2016

And So It Continues

April 25, 2016

The latest in the on-going saga: I went back to the doctor for another follow-up visit. Two weeks ago I went in concerned that part of my incision wound wasn't healing right; doc agreed. Today's visit was to check progress, and he said if anything, it's a little worse. Not bad, not irreparable, but not what it should be six weeks post-op. Not enough good blood flow in one particular area, though everything else looks good and has healed very well. The wind up is I'm going back in for surgery to repair that area, probably next week. It should be a short surgery, with two days off for recovery. The bummer is I'm out of sick leave, but he's going to try to schedule for Friday, so that I only have to take one day without pay. Hopefully they can accommodate that. I'm so glad the surgery after that can be done in the summer time so I don't have to worry about taking time out of school. Who knew when I started this school year that it was going to be this kind of year. Nothing to be done but keep on keepin' on.

Monday, March 21, 2016

Surgery #2

March 21, 2016

I am a week post-surgery as of today. After my mastectomy in December, the last three months have been an exercise in camouflage every day, trying not to let my vanity take over too much while I tried to mask a pretty marked asymmetry. Last Tuesday I went in for the second of at least three surgeries, this time to undergo the knife on perfectly healthy, non-cancerous tissue.  The reduction on the left side will help even me out.  To be honest, I was a little more nervous before this surgery than the last, even though this one wasn't nearly as invasive as the first one.  A good friend of mine said she thought it might be just because this surgery wasn't a medical necessity (although she stressed that I should absolutely feel okay about my decision to have it).  I suppose there was some truth to that.  I'm completely comfortable with with my choice, and I'm glad I did it, but yes, it was a little weird that I was choosing to have optional surgery.  (My historical fear of knives and needles is well-known.) 

Anyway, now here I am one week past surgery.  Recovery has been infinitely easier than the last one, although a few days ago I realized that I was having some pretty serious pain in my right shoulder--not even the side I had the surgery on. I even called the doctor and he said it was possible there was some strain on the shoulder, since they had to sit me up a couple of times during the surgery to make sure everything looked right, not to mention having to move me on and off the table while I was under anesthesia.  (Makes sense, but how weird is that, to think that the sit you up like a puppet during surgery?)  A few days and a few pain pills later, the shoulder soreness seems to have mostly subsided.  I'm still wearing a super tight compression bra with lots of bandaging and tape underneath, and although there's not a lot of pain underneath it all, there's a discomfort factor and an itchiness.  I haven't seen what it all looks like post-surgery yet because of all of that, and I have to say I'm a little bit leery about that.  I'm sure it'll be fine--people have breast reductions all the time--but this feels even more like a Frankenstein redesign than the first one.  Maybe I'm just preparing myself for the worst, hoping it'll look better than that.  We'll see on Wednesday, when I go back in for a follow-up to get all the bandages off.


Monday, January 18, 2016

Glenn Frey

January 18, 2016

Another? So close? Glenn Frey died today.  And again, this one seems hard not to take personally.  It has been a very tough week for the entertainment industry.  I am sure our parents and their parents before them hit a certain age and then suddenly they realized that the entertainers they had grown up with were beginning to lose the undeniable battle with age and mortality.  We have clearly now hit that age in our generation.

Several years ago, after Doug and I had become reconnected, I invited him to attend an Eagles concert with me at the Savemart Center.  Doug wasn't a fan of The Eagles, but I had been for many years.  Lisa was originally going to come up and go to the concert with me, but those plans fell through and she wasn't able to make the trip up to Fresno.  The kids were with their dad for the weekend, and Doug was going to have the weekend off from his truck driving travels, so even though he was reluctant, he agreed to accompany me.

They weren't great seats--directly on the side of the stage, and pretty high up.  By the time we got there, the crowd was beginning to fill up the arena, so when we looked up to find our rows, we spotted two very large women sitting with one seat between them and one more empty seat on the aisle.  We began to surmise--correctly so, it turned out, that because of their size, the women had spread out and were hoping no one had purchased the seats next to them.  They couldn't possibly have sat comfortably next to each other.  We made our way up to the row, and sure enough, we had the aisle seat and the one next to it, which one of the women was occupying.  She apologized for being in our seat and moved to the seat adjacent, but she simply didn't fit all the way in the seat, and she couldn't help encroaching into my space.  (We laughed about the circumstances later.  Perhaps is was fate trying to literally push us into each others' proximity directly.) Determined to make the best of it, I spend a good deal of time sitting on Doug's lap.

The concert was fantastic despite the minor discomfort.  Getting to hear the musicianship and the vocal talents (the harmonies!) live was exactly the kind of concert I had hoped for--The Eagles didn't need doctoring and effects in the studio to sound good.  The just WERE good.  Somewhere in that night, sitting on Doug's lap, Doug began the slow turn that made him really appreciate The Eagles as a talented group.  Somewhere also in that night, I suddenly realized that this man, whom I had known for years and had become even better friends with as adults than we ever had as young sweethearts briefly in high school, was not going to be just a friend to me.  Somewhere in that night, soaring among The Eagles soundtrack, I let myself begin to hope that real love and life was in our future.

The Eagles, and Glenn Frey, are a piece of the fabric of the us we are today.

Some Glenn Frey greats:  "Take it Easy", "One of These Nights", "Tequila Sunrise", "New Kid in Town", "Heartache Tonight", and "Hotel California". 

Thursday, January 14, 2016

Alan Rickman

January 14, 2016

Severus Snape, The Sheriff of Nottingham, Colonel Brandon, Harry, Hans Gruber...

He was genuinely one of my favorite actors.  He breathed life into his characters and filled the screen with his presence.

Rest in peace, Alan Rickman.



Monday, January 11, 2016

David Bowie

January 11, 2016

We woke up this morning, and I think the news hit both Doug and me harder than we expected: David Bowie had died at the age of 69.  I think, in addition to Bowie being undeniably gifted, creative and iconic, it has struck us that this is the beginning of losing people who rose to their heights in our own lifetime--they belonged, so to speak, to our generation.  There are others who have died whose incredible talents have been lost too early--Whitney Houston, Amy Winehouse, to name just a couple--but this dying of disease, of time playing out its song on the human body and winding to a close, well it serves as a reminder of the temporal nature of us all.  And that's a melancholy song indeed.




Friday, January 8, 2016

Things I Didn't Know Untl I Had Surgery

January 8, 2016

--How thankful I am that the surgery was on the right side, since I'm left-handed.  Turns out, I use my left hand and arm quite a bit, and it would have been much more uncomfortable if the surgery side and the handedness side were the same.

--I have a tendency toward a very low heart rate.  In the hospital, the doctor was a little concerned because it was 40.  In looking back through my recent medical visits, it ranges from 48-73, but usually around the 60 mark.  The doctor tells me that's something to keep an eye on, because 60-80 is normal.  When he first brought it to my attention in the hospital, he said people don't usually have a heart rate that low unless there was something a little or abnormal or unless that person was a Olympic, elite-level athlete.  I told him I'd certainly never been accused of being an elite level athlete, so perhaps we'll need to keep an eye on it for other possible medical causes.

--That I would lose feeling of about half the surface of my underarm on the right side because of the lymph node removal.  The feeling might return somewhat within a year or a year and a half.  That makes both shaving and using deodorant half a guessing game, since I can't feel it--it's a strange sensation (or lack thereof).

--Driving made me more sore than I expected.  I thought the seat belt would be the biggest issue.  It is a bit of an issue, but not as much as turning my head to change lanes or back up.  Turning your neck stretches the chest more than you realize until your body makes you pay attention to that particular fact.

 --How many different sizes and shapes there are of implants.  I thought the choice was just between saline and silicone.  Not so.

--How many stitches are involved in this kind of surgery.  Actually, I asked my plastic surgeon, and he said he couldn't even estimate.  There are the stitches on the outside, of course, but then he explained all the different areas and layers they had to stitch up on the inside first.  So how many stitches? A LOT, is the general answer.

--That plastic surgeons measure size in terms of cc's, as opposed to a bra cup size.  And 550 cc's, for example, can be a very different cup size for different women, depending on their build and body shape.   Try dropping into a Victoria's Secret and ordering a 500 cc bra.  I'll bet they don't have one.

--How fortunate it is in terms of timing that my surgery was during the winter months, when it is much easier to cover up a rather marked difference in size between the two sides until the follow-up surgery happens.  It would be a lot more difficult to balance my look with scarves and layers if it were summer time.

--That the spacer in my body feels like an out of place, oddly shaped foreign object that doesn't feel or look quite right, mainly because it is an out of place, oddly shaped foreign object that doesn't feel or look quite right.  Its replacement is supposed to feel much more natural, but I've got a lot more time to get to know this one first while everything is still healing--somewhere in the neighborhood of at least six months.

Thursday, January 7, 2016

2015 Did Not End Like I Thought It Would: Hello Cancer! (Part 6 of 6)

January 7, 2016

The week after the big pow-wow with my medical team at the Radin Breast Center and the reveal to all my family and friends, I was scheduled to meet with my plastic surgeon.  To be honest, I was more than a little nervous to meet him.  A couple of the doctors we had met with told us he was a true perfectionist and even an 'artist' at his job.  That was good.  They also told us not to be put off by his direct, fairly impersonal and cold demeanor.  I heard that again from a couple of former patients of his.  I went to the internet for more research before my appointment.  A couple of reviews declared him outright mean, and even said he had made them cry.  That was not so good. I don't want to be made to cry about a situation I already want to cry about! I went to the website of his clinic.  They have 'before' and 'after' pictures posted up there (no faces, in case you were wondering--just pre- and post-reconstruction close-ups).  As I looked through them, I actually began to realize that if reconstruction was in my future, it wasn't going to be as disfiguring as I might have thought.  I asked Doug if he would want to look at the photos, or if that might be too off-putting for him.  He said he wasn't worried about being put-off.  We looked at the photos together and honestly, were both relieved.  The man's reputation as an artist appeared to be well-earned.  I told Doug I hoped his reputation for lack of bedside manner wasn't equally accurate.  Since Doug was going with me, he assured me there would be no way he was going to allow someone to upset me or make me cry.  If he wasn't the right guy for us, we'd demand to be seen by someone else.

At my appointment, I was so nervous I was sick to my stomach--the first time in all of this that I had really been nervous, except when I had to tell the kids.  But to be honest, I have no idea how so many people felt the need to forewarn us.  He was direct, certainly, but he was compassionate, thorough, asked several times if I had any questions, and told me all of my options, as well as his recommendation for the path he thought was the best course of action.  Every subsequent visit with him has been the same, as a matter of fact.  Perhaps he adds an extra layer of compassion for cancer patients.  Doug thinks that it's possible that because my 6'2" husband accompanies me to all my appointments, that might have something to do with it.  He also says that people deal with their diagnoses in a wide variety of ways, and that certainly can color their perceptions, which could definitely explain the reviews I read online.  When we met him, I wasn't angry, or in shock, or in denial.  I just needed to know what we needed to do. In any case, I am grateful that he is my plastic surgeon, and I have found him to be quite personable, patient, and thorough.

In our meeting, one of the possible treatments he talked about would be to complete the mastectomy, perform the reduction on the other side, and do reconstruction all at the same time.  He advised against that.  A typical simple (Again, a misnomer.  Try having one--it's not that simple!) total mastectomy would have me under anesthesia for 2.5-3 hours.  Trying to take on everything all at once would mean a stretch of closer to 9 hours under anesthesia, which of course elevates the risk of complication.  Being out for that long was honestly pretty scary to me, and the doctor himself said he much preferred taking it on in stages.  Not only would the surgery be shorter, but the recovery would be much less painful.  Less painful is good.  Three shorter instances of moderate pain is definitely more appealing to me than one long stint of lots of pain in multiple parts of my body simultaneously.  The game plan then: mastectomy, with a skin expander to stretch the remaining skin over the course of the next few months, then a reduction and lift on the other side about three months after the initial surgery, and then three or four months after that, another surgery to replace the temporary skin expander with an implant and finalize the reconstruction to look like the 'new and improved' healthy one.  Finally, sometime after that, I'd have the option of having the areola and nipple tattooed on the reconstructed breast, since that would be removed during the initial surgery.  Huh.  Add that to the list of things I never thought I'd have:  first, a plastic surgeon, then an implant--and a tattoo!  Welcome to your new reality, Donna!  Having the plan, though--knowing what would happen going forth, was a huge relief.

I was told to call the breast surgeon's office as soon as I was done at the plastic surgeon's office that day, so that everyone could coordinate schedules and get me on the hospital's calendar.  I called as soon as I got into my car in the plastic surgeon's parking lot.  I needed to let them know there were some big dates they just couldn't schedule on--two of my children have November birthdays, and my husband has a December birthday.  I desperately wanted to avoid having to ruin one of their birthdays by having them worry about me coming out of surgery on those days.  I also had a Fresno County Educator awards ceremony at which I was being honored that was coming up.  Vain as it may sound, I really didn't want to miss out on that, either.  As it turned out, the doctors had not waited for me to call to set my date--the hospital calendar was booking up fast, and cancer patients don't wait until the end of the line.  They want to get me in as soon as possible.  I never even got to tell them my 'please avoid these dates', but they managed not to hit any of them anyway.  They told me we were set for December 4th.

The next step was to sit down with my Learning Director and my principal (and then the folks at Human Resources) to plan the logistics of leaving my classroom. We have a wonderful retired English teacher in our district (a fellow breast cancer survivor, I discovered), who was willing to take on a long term sub position for me.  I had been told I would be out anywhere from 4-8 weeks, and though I was tempted to take the minimum time off, I knew that wasn't the smartest thing.  I wanted to give my body a chance to really recover.  The end of the semester would be 7 weeks out from my surgery.  We all agreed it would make the most sense to let my sub finish out the semester (with my lesson plans), and then I would come back to start fresh at the beginning of the second semester.  A week before Thanksgiving vacation, I told my students that I would be leaving them shortly after our return from the break and would be gone for several weeks.  I knew they would ask why--a reasonable question--and I debated what to tell them.  My initial thought was that it would be too much information, perhaps too personal, to tell them I would be having surgery for breast cancer. (I teach high school seniors.  Even if I just said I was going out for surgery, I knew they would ask about the nature of the surgery, and they did.)  Ultimately, I decided that if I was going out for knee surgery, or kidney surgery, or even brain cancer, I wouldn't feel sheepish about being honest with them about it.  Why should breast cancer be any different just because it had the word 'breast' in the explanation? So I was honest with them, and they were so sweet and compassionate, and some of them even told me stories of their moms or aunts who were survivors.  Many of them said they'd miss me, were hoping to hear updates during my recovery, and would be praying for me.  Before I left I got two huge Get Well cards signed my several of my students. (Reason #3982 that I love my job, by the way.  I teach some pretty great human beings.)

The Friday we got out for Thanksgiving vacation was my awards ceremony.  My sister Lisa had already been planning for months to come, but the next week was Thanksgiving, and the following Friday was the day of my surgery.  Lisa lives 4 or 5 hours away from me (depending on how many bathroom breaks you need), and traveling up here three weeks in a row seemed excessive.  I tried to tell her I didn't expect her to come all of those times--it would be too much.  She wouldn't hear of it.  "Of course I'm coming.  It's not even a question!"  My sister Laura, who lives almost the same distance, was also planning to make the same trip three weeks in a row.  Although I felt bad that they were going out of their way like that, I knew I'd do exactly the same thing.

The morning after the awards ceremony, my sisters and I had lunch with my friend Mo, and they shared with me that they had been conspiring to get meals taken care of for my family for the weeks following my surgery.  There's a website I had never heard of called "Take Them A Meal" that is designed exactly for this purpose--to organize friends and family by asking them to sign up for a specific date to bring dinner to a family in need due to surgery, mourning, or recent birth in the family, just to take that burden off the family.  I had to ask them to switch the subject because I was so touched it brought tears to my eyes.  They shared the link on Facebook and I had friends and even a couple of people I didn't even know sign up to take care of us for the entire month of December.  I protested and said I'd be up to cooking after awhile, and that Doug and the kids could take care of the cooking chores, but both Lisa and Mo said that their job was to take care of me, and that people were happy to have a way to help out.  (Doug was so incredibly thankful and grateful as we'd open our doors each night for our dinner delivery that he told me, "We are definitely going to pay this one forward once you're better.  What a great way to give back when someone else is going through something like this!")


When the girls were done talking about the meal plan they'd been working on, I talked to them about a plan that I had been thinking about.  Since the sisters were both going to be in town again the following weekend due to Thanksgiving, I told them that I had been thinking about having a friends and family get-together for a "Farewell to the Boob" party.  Another one of my girlfriends who had had a mastectomy had a Boob Send-Off party at Hooters (I joked that I wanted a t-shirt with the 'S' at the end blacked out so it just read "Hooter" instead!)  I considered Hooters for a bit, but then I decided that instead I wanted to have it at our old karaoke stomping grounds. (Music has always been an important part of my life.  If you didn't see my Survivor playlist, you can check it out here: http://msprimadonna67.blogspot.com/2015/12/im-survivor-playlist.html) Thai Fusion, our karaoke hangout, was a place we'd had many fun times with lots of our friends, and I wanted to just get out and have a good time surrounded by people I love.  The girls loved the idea.  Doug was a little skeptical; I think he thought it would turn into a sad or melancholy gathering--sort of a facing-our-mortality assembly.  I understood where he was coming from, but I also really thought it would be a fun way to just get everything out in the open and celebrate friendships.  I specifically called it a "Farewell to the Boob Party" on the invitation, because "Farewell Party" could definitely have turned the mood dark.  The invitation also said that anybody who was weirded out by the idea of that kind of party could just consider it a "We're-All-On-Vacation-So-Donna-Wants-To-Have-A-Party" party.  I booked our regular karaoke place for Saturday night, and at least 40 people came to sing, dance, talk, and laugh.  Even my oldest daughter, who is old enough to stay out at a karaoke place until we shut it down at two o'clock in the morning, was able to join us because she was home for Thanksgiving.  We even had a couple of special renditions of songs that were sung in my honor, such as "Goodbye to Boob!" ("Goodbye to You" by Scandal)  It was a fantastic and incredibly fun night.  There is nothing like spending a great time with those you love to fortify you as you head into tough times.

The following Tuesday I had to go in and get all my pre-op work done--blood work, ekg, chest x-ray. The following Wednesday was my last day with my students; the following Friday was my surgery, bright and early.  I wasn't too happy about having to be at the hospital at 5:30 in the morning, but on the bright side, it meant that I didn't have to fast as long.  I wasn't allowed to eat or drink anything after midnight, so if they had scheduled my surgery at 11 instead of 7:30,  I might have gotten grumpy having to wait so long to eat.  (I like to eat.  I also like to drink Diet Pepsi.  No Diet Pepsi for long stretches of time have been known to be hazardous to other people's health.) I'm surprised I wasn't more nervous, but Doug and Lisa were by my side, and every single doctor, nurse, technician, employee that we encountered was friendly, calming, and competent, both before the surgery and during my after-care stay.  When they wheeled me into the operating room, I was a little overwhelmed at the enormity of it all, but they prepped me with such efficiency and professionalism that I didn't remember much at all before the anesthesia took over.  The next thing I remember, I was coming to in the recovery room, and they brought Doug in shortly thereafter.  The first thing I wanted to know was about the lymph nodes.  "Clear. Looks like we got it all, and it didn't spread to the lymph nodes."  I think of Doug, Lisa, and me, I was the last one to get to hear that good news.  They had already come out and shared it with them, and they had passed it on to friends who were waiting to hear that I had come out of surgery okay.

I spend the rest of that day and the next morning in the hospital, with both Doug and Lisa at my side.  I was uncomfortable, of course, but the pain was manageable.  I was overwhelmed with well-wishes via texts to me or phone calls to Doug and Lisa.  Nicholas and Danielle came to visit me that evening after they had dinner at their dad's, and I spoke with Bree on the phone when I woke up from surgery. Once I saw or talked with all of my kids to assure them that everything had gone well, I felt more relaxed.  Bree arrived late that night (having driven back from the L.A. area after work), and was there with me the rest of the weekend once I was discharged from the hospital. My plastic surgeon was the one who came to see me to make sure I was ready to be discharged; he said he was incredibly pleased with the way the surgery had gone, and that he would see me in a week for a follow-up.

Back in the old days, or so I've read, pioneers used to 'circle the wagons' when they felt they were being attacked, or when they needed to be proactive about protecting their own.  From the first moment I started to let people know about my impending, and then confirmed, diagnosis, I have felt the wagons circling around me, protecting me, caring for me, and making sure my family was doing well.  And oh, what a big circle of wagons it is!  Of course there were the meals that were provided for us, but there were also hosts of people praying, sending messages of love and positivity, visits from friends who knew I might be getting stir crazy, offers to drive my children places if needed, offers to donate sick leave days should I need it, offers to check in on my kiddos or on Doug to make sure they were okay, magazines and books that people brought to help pass the time-- a million little ways I--we--felt lifted up and cared for.  And right there, at the very center of the circle with me, is Doug, who has been at every doctor appointment with me, who made sure I was taking the medication I needed, who served me my meals, who washed my hair in the sink for me when I couldn't do it myself, and who even helped with the drains we had to empty twice a day and the bandages we had to change without flinching.  I cannot even begin to express how grateful I am to everyone who has been a part of this recovery process, no matter how big or how small a role, because I know there are those who are not so fortunate as to have the kind of wagons I had circling me, those who feel they are fighting their battles alone.

Truth be told, I feel a little bit like an imposter when I talk about being a cancer survivor now.  I am a cancer survivor.  My oncologist proclaimed it to be so-he said I am cured. (Hallelujah!)  But my journey was not the tremendous battle many face when they hear the word cancer.  Stage 0 seems like something someone might scoff at if they are facing their 3rd round of chemotherapy, or if they've just learned of their 2nd recurrence of the disease.  I haven't lost my hair; I haven't gone through radiation.  Some people even lose their spouses, if the spouse can't handle the strain or the physical metamorphosis that can be a very real part of the cancer journey.  Some people go bankrupt from exorbitant medical costs and inadequate (or no) medical insurance.  And some people do encounter doctors who lack empathy, or employers who lack patience, or families who cannot or will not be by their side through treatment.  I have experienced none of these things.  In the war-torn field of the cancer battle, I am not one of the troops on the ground continuing to battle in a seemingly endless onslaught.  I am not driving the tankers or flying the bombers.  I am back home in the offices, processing papers.  It's easy to be brave, I suppose, when Stage 0 is the diagnosis.  Losing a breast is no walk in the park; it's a new reality, really.  But when I read about the real bravery of women who face such incredible odds in their fight, I am in awe.  And I do have something akin to Survivor's Guilt.  Not many would say they would feel lucky having gotten a cancer diagnosis, but compared to how difficult so many others' cancer stories are, I do feel lucky.  I am still here.  A wise friend once said to me that it's not a competition; someone else's even more difficult journey does not minimize what you have gone through.  And that is true.  I will remind myself that I have fought, and I have earned these scars.  I am a survivor, and my battle is already won.

Not so fast, you might say.  Hubris has been the downfall of many.  True. Could it come back? Yes.  And my recovery is by no means over.  I have two more surgeries on the horizon, and though I hope there are no complications, there is always that possibility.  But I will play this game as I (mostly) have from the beginning.  I will keep a positive spirit, I will look for a silver lining whenever a dark cloud appears, and I will keep a sense of humor.  A few people have said to me they have been inspired by my positive attitude, and honestly, if I have been an inspiration to one or a few, I am honored.  I look at it like this:  I was diagnosed with cancer.  Whether I choose to let that drag me down, or whether I choose to look for the silver lining, the diagnosis doesn't change.  The only thing I have control over in that circumstance is how I go about responding to it.  And trying to remain positive just seems like such a better choice for my heart, for my soul.  It lets me continue to be who I am, instead of allowing myself turn into just my diagnosis.

So why tell this story?  Part of it, of course, is because it is part of my history now--one that I pass down to my children and their future children.  That's part of why many of us tell pieces of our personal narrative.  But it's also because I've been amazed at how many women I have heard from who have experienced breast cancer that I never would have known or known about if I hadn't shared my journey.  We are now part of a shared experience--a bigger history.  And the more we know each other, see each other, talk to each other, the easier it will be when someone else gets thrust suddenly into this sisterhood to be able to call out to that sisterhood to begin to circle the wagons and enlist the support of those who have been right there where they are and are prepared to help them in the battle ahead.

Wednesday, January 6, 2016

2015 Did Not End Like I Thought It Would: Hello Cancer! (Part 5 of 6)

January 6, 2016

As promised, the day after my phone call with the doctor who confirmed my biopsy results, my Nurse Advocate, Mary, called me from Clovis Community Hospital's Radin Center.  The Radin Center is a comprehensive breast care center that coordinates and facilitates all the various appointments and treatments that one is suddenly faced with when diagnosed with breast cancer.  (I find it a terrible misnomer, by the way, to say someone has tested positive for cancer.  There's nothing positive about being told you have cancer!) Mary told me she could take my medical history over the phone, and that she could get it out to everyone on my team so that I wouldn't have to repeat the same background information to every person I would be seeing.  She told me that it had been arranged for most of my team to meet me and discuss the findings and my treatment options the next day--Friday afternoon--if that was convenient for me. If I preferred, she said, I could go to each doctor's office individually, but part of the beauty of the Radin Center is that it's a team home base, so to speak, and all of them could come to me at once, rather than me having to make several pre-op appointments all over town.  I can't imagine how much time that would have taken, not to mention time off of work it would have taken if I had had to schedule all of those doctor's appointments separately, and suddenly I was keenly aware that I needed to be sparing about any time off I'd be taking pre-surgery.  Who knows how many days I'd need off post-surgery.  Mary confided in me that she herself was a breast cancer survivor, and she knew how overwhelming it all must be, and how many questions I must have.  She told me I could call her anytime with any questions or concerns.  She even told me she could set me up with a social worker if I felt I needed it, or someone to go shopping with me to be fitted for post-mastectomy bras or prostheses after surgery, if that was the route my team were to decide upon.  It was comforting to talk to Mary, and I was relieved to know that the next day I'd be able to actually start getting a course of action in place.

I called my sister Lisa that night and gave her the update.  "I'm not worried about the outcome.  I mean, I'm stressed about the surgery and all of the process, because of course doctors scare me.  Needles scare me. I don't think I'm going to manage getting through all of this without having to confront either of those little phobias.  But I'm not worried about the outcome.  First of all," (and this had been something she and I have morbidly discussed over the years), "one of the things I have yet to do on my 'Life List' is make it to the oldest age in our immediate family thus far."  Our father had died at the age of 46; Mom died at 52.  My oldest brother only made it into his early 40s.  I didn't think it was unreasonable to aspire to make it past 52; in fact I have plans to make it well beyond that.  "Besides that," I told Lisa, "there's no way I'm not going to see Danielle graduate, or help plan my kids' weddings.  And I haven't had grandkids yet!"  Nope.  No way I'm going to miss out on any of that.  I was BORN to be a grandma someday.  So, you know, worrying about not being around wasn't even an option for me.

As luck would have it, Doug's project at his work finished up, and he was due for some time off the same week I was entering into our new reality.  Fortuitous timing.  He didn't need to take any time off in order to be with me for all of the appointments and would be home to take care of me after the surgery.   We started with the team meeting on Friday afternoon at the Radin Center. Prior to meeting with me, all of the team met together to discuss the test results and view the ultrasound pictures, and then each one of them would come in and talk to us individually about his or her role in my treatment.  Dr. Gumina was my breast surgeon; she talked with us first about what a full simple mastectomy would mean in terms of surgery.  She'd be working in tandem with Dr. Zuniga, my plastic surgeon during the initial surgery.  During the two follow up surgeries, Dr. Zuniga would be working solo, as reconstruction was a plastic surgery procedure; her job was to remove the cancerous tissue and test the lymph nodes during the first surgery.  This was the first time I'd heard or even considered that we were talking about more than one surgery.  I had just barely gotten my brain wrapped around the idea of one surgery!  However, she also confirmed the diagnosis of Paget's disease of the breast, and that it was DCIS.  I asked her what stage cancer it was--one of the biggest questions I had going in.  She said based on everything she had seen, it was Stage 0.  Honestly, I had never even heard of Stage 0.  Stage 0 was good!  And she assured us she had every indication that she would be able to excise all of the cancerous tissue and that the prognosis was excellent.  Of all the things I heard that day, that was the biggest relief--the one clear way I had to conceptualize what was going on in my body.

We next met with the oncologist, Dr. Perkins, who reiterated what Dr. Gumina had said.  He also said that during the surgery, they'd test and remove 2-3 lymph nodes to see if the cancer had spread, though he highly doubted it.  If there was evidence it had spread, they would take out more lymph nodes, and that would inform them whether chemo or radiation would be necessary.  Paget's, he said, was something they didn't really know the cause of, and he assured me that nothing I had done had contributed to contracting the disease.  He told me I'd be following up with him for the next 10 years as they monitored my progress after surgery.  Ten years!  Most people's relationships don't even last that long anymore! But here I was meeting a man to whom I would be inextricably tied for the next decade.  It's a good thing I liked him!  The radiation oncologist followed Dr. Perkins.  His name was Dr. Silveria.  He was brief; he was fairly sure I wasn't going to ever even see him again, as Stage 0 DCIS with a full mastectomy didn't generally indicate any need of radiation.  Of course all of the doctors indicated that there was always a possibility they would be surprised by something they didn't anticipate once they got in there--they didn't want me to think they were guaranteeing there wouldn't be any chemo.  They've got to have a disclaimer clause, because even exact science isn't always an exact science.

Finally, we met with my geneticist.  (I would meet with the plastic surgeon separately the following week.).  Dr. DeLozier was an enthusiastic woman who seemed fascinated with my family history.  To be honest, on paper our family history looks pretty dismal.  I've already talked about how early everyone in my immediate family has tended to check out.  I have always chosen to sort of gloss over that particular statistic and focus instead on the fact that besides my mother, the women in my extended family definitely have longevity on their side; most of them have lived well past their mid-80s and into the 90s.  I'm planning to follow their lead.  However, within our immediate family there has been kidney disease, throat cancer, heart disease, high blood pressure, thyroid issues, arthritis, lupus, depression and other mental health issues...no wonder the geneticist was fascinated with me.  However, she did say that her primary goal was to see if I could be tested for the BRCA 1 and 2 genetic mutations (in addition to a panel of 4 more mutations that they test for).  She--as well as all of the other doctors--all thought my Paget's was unconnected to BRCA, but the doctor said that that because of how young I am (48 is apparently young to develop Paget's) and with my family's health history, she thought she'd be able to get approval to get the test covered by insurance.  The test, I understand, is an expensive one, somewhere in the neighborhood of $3,000, and most insurance companies don't like to cover it.  BRCA, or as even medical professionals are calling it these days, "The Angelina Jolie Gene" (so called because it came to the forefront when she had a proactive double mastectomy due to testing positive for it) is a mutation that makes you much more likely to develop breast cancer in the unaffected breast, have a recurrence in the affected breast (if you have a lumpectomy rather than a mastectomy), or that your sisters or daughters could develop breast cancer.  Again, the doctors didn't actually think that BRCA was the cause, but the more data they have to look at, the more doctors can understand and treat those who do test positive for BRCA.  There's also a connection they're looking at that there may be a connection between IVF and breast cancer, and since Doug and I had (unsuccessfully) undergone IVF a handful of years ago, that was something else they could gather data on with genetic testing.  I was happy to try to get the test covered because it would give me assurance I could give to the very important other females in my life that my diagnosis wouldn't put them at greater risk.    Fortunately, my insurance did choose to cover the test. (The results that came back a few weeks later did, in fact, confirm this great news--I tested negative for all of the genetic mutations they checked.)


My take away from all of the meetings was:
1)  Stage 0!
2)  3 surgeries!
3)  Anywhere from 4-8 weeks off of work.
4)  Probably no chemo or radiation (no illness, no hair loss and wigs)
5) I'd be meeting with the plastic surgeon, and then everyone would get all their calendars together and get me a surgery date about a month away.

Now I felt I had enough information to take to my kids.  Two of my kids are worriers, planners.  Now I felt I could answer most questions they might have, at least in the short term. When we picked up Bree from the airport, I asked the other kids to come with us, and once we got in the car, I suggested we go grab something to eat before I took them over to their dad's, where they would all be staying for the weekend to visit with their grandma.  It was a pleasant meal, and I didn't really know how to jump in with such heavy news.  Finally, Doug looked at me and said, "Hey Babe, we really need to just do it."  I took a breath and jumped in.  As soon as I said the word cancer, I saw tears in the eyes of the kids, so I took a speed course to the good news--it was caught early, there's going to be an operation and they'll get it all, they don't think I have to worry about chemotherapy, and everything is going to be FINE.  I'm not planning on going ANYWHERE.  Although I know they were worried, I think they took the news well and were perhaps relieved to know that a cancer diagnosis didn't have to mean something dire.  Doug thought maybe I might have underplayed it too much--made it sound too minor--but I decided that was enough for now.  They could take some time to digest that information without having to imagine the worst.  The rest we'd learn and share as we went along.  After all, Doug and I were both awfully new to all of this information as well.

Having finally broken the news to the kids was a huge weight lifted from me.  As soon as the kids were at their dad's, I decided to message a big group of friends and family to let them know as well.  As I said before, I'm a believer in prayers, positive vibes, and love as healing forces.  I don't think we tap into that enough as a society, and often there's a sense that people feel like there's a strength in suffering in private--a brave and stoic front.  I just don't even think I'm capable of holding that kind of thing so close to the chest, and I don't think there's any shame in asking people to help generate positivity.  I think Doug was a little skeptical, being in general a more private person than I am: "Why do we need to share it with everyone? Do you think that's necessary?"  Necessary? No, probably not.  But you know what?  Everyone deals with their own mountains to climb in their own way, and there's no right or wrong way to do it.  For me, I just kept thinking to myself, if "X" was experiencing something major in his or her life and I didn't know about it, I would hate that I hadn't known to help support them in any way I could.  Those are the kind of people I tend to surround myself with, and I didn't want them to find out second-hand or after the fact.  Also, I knew that Doug was going through this process in his own way, and although we share everything with each other, I knew that he would feel like he might not be able to share his fears with me because he wouldn't want to add to my burden.  I wanted people we know and love to not only support me, but to check in on D as well and give him a shoulder or an ear whenever he might need it.  My kids would have each other to share concerns, but I'm usually that person for Doug.  I knew our friends would know to reach out to him as well as me along the way.  I had no idea how very much we would be loved and supported once the word got out.

Tuesday, January 5, 2016

2015 Did Not End Like I Thought it Would: Hello Cancer! (Part 4 of 6)

January 5, 2016

When I got home from work that day, it was essentially a normal night for us.  The kids were home, and I think Doug was a little shocked that we never really addressed the elephant in the room.  Not that night, or even the next couple of days.  The kids were home with us until they went to their dad's on Saturday night, and I didn't want to hide behind closed doors and whisper what-ifs.  I didn't want to do anything that might make them worry or suspect something was going on.  Doug took his cue from me and just let it lie for the time being.

In the meantime, I dove into research mode.  Without really knowing my diagnosis, I looked up all kinds of possibilities.  I looked up Paget's disease, of course, since that had already been thrown out there as a possibility by my primary doctor. (Paget's is a specific type of breast cancer named after the doctor who discovered it.  Only 1%-5% of breast cancers is Paget's disease of the breast.  I also learned that there are other diseases named after Paget, so to just say Paget's disease is kind of non-specific.)  I looked up stages of breast cancer, since that's really the only reference point I had ever heard about in terms of progression of the disease.  The doctor who read my slides didn't give me any indication about what she thought the stage was, so I tried to guess.  According to what I read, if it hadn't traveled outside the duct, it would be considered a Stage One.  But I also read that if the affected area was larger than a certain number of centimeters, it would be considered Stage Two or Three.  Mine was 5 or 6 inches.  Stage Four meant the cancer had spread to other parts of the body, with significant lymph node involvement.  So my best guess was that it was Stage One, Two, or Three.  I also looked at survival statistics for all of those stages.  Stage One was very promising.  Stage Two wasn't even too bad.  I started liking the statistics a lot less after that.

I read up on what a mastectomy would entail.  Online research varied widely on recovery time and methods.  I had no idea.  Would I need a week off of work? Two weeks? Two months?  It would all depend on a variety of factors, most of which I had no definitive answer to yet.  Would I need chemo? Radiation?  Single or double mastectomy? Immediate or delayed reconstruction? So much depended on information the doctors would garner from the biopsy, but I tried to be as prepared as possible in advance for the information I might hear. I was wandering around in a proverbial maze of information without any guide or direction, but it did allow me to become a sort of objective observer of the process instead of focusing on my personal investment in the outcome because I had no idea what that would be.  I was an avid and voracious researcher, trying to find out hypothetical information.  Despite that, I had to continue to push back the nagging thought that crept up quite a lot in that first week--the knowledge that sixteen years ago, with no prior warning, my mom had been diagnosed with a late-stage aggressive kidney cancer.  Just nine months after her diagnosis, she was gone.  I tried very hard not to let that thought take up too much real estate in my brain that week, but it was there.

One of the pieces of research I did was looking into the fine print on my medical benefits package, which I had never really had to delve into too much.  On that Saturday night, as we were getting ready to go out for a date night after the kids had gone to their dad's for the weekend, I brought it up to Doug.  "I know we haven't really talked about this yet, but you know I've been reading up, and my insurance covers not only a mastectomy, but reconstruction as well, and even reductive surgery on the other side in order to make them match."  It was the first thing I'd really said since I gave him the initial news.  Once again he reassured me that how it all looked was not at all his primary concern, but I think we were both relieved for my sake that we had started the conversation finally, and that there was good news for helping me to feel like I would look 'normal' after all was said and done.  After I told him my rationale for not having much of a conversation when the kids were home, I think it made more sense to him that I hadn't really acknowledged that just two days earlier I had dropped a pretty big bombshell on him out of the blue.

So then, the wait.  Although Doug had offered to go with me to the biopsy on Tuesday, my good friend Mo offered.  Since the biopsy was pretty much a solo deal--no meeting with a doctor, no decisions to be made, just moral support from the waiting room--we opted for Mo to go to this one.  Not being thrilled about doctors or needles made this an especially nerve-wracking appointment, but I knew Mo had also been through that particular experience and it was a great sense of support for me just knowing that she knew what I was going to be doing.  Although Doug would absolutely have been willing to go--and made it clear that he was completely on board to be at all the other appointments that were surely in my future--I am so thankful Mo was there.  It took longer than I expected, and though it was an uncomfortable experience, because of the design of the table I never saw the needles or the actual process that was occurring.  That's probably a good thing.  The doctor who did the biopsy said he would call the next day with the results.  I specifically remember him saying that when he called I was absolutely not to answer if I was driving.  The poor man has probably had to give some pretty bad news to an awful lot of people, and I think he was cognizant that someone operating a vehicle while receiving that kind of news could result in erratic behavior behind the wheel. He assured me that if I was driving when I saw him call, he would still be there when I stopped or pulled over to call back.

As promised, he called back the next afternoon.  I was in a meeting but was anticipating the call, so when it came, I stepped out of the room.  The doctor's first question? "Are you driving?" And then he told me, on Wednesday afternoon, October 14th, that I had tested positive for cancer.  He was kind and compassionate, but reiterated what he had suspected when he told me the previous day that he was fairly certain what we were dealing with was DCIS--ductal carcinoma in-situ.  That meant nothing to me.  All I really heard was I had cancer.  It was verified.  He then told me that a surgeon had already been assigned to me, as well as a plastic surgeon, an oncologist, and radiation oncologist, a geneticist, and a nurse advocate.  The nurse advocate would call me the next day to set up my appointment to go over all my options for treatment, which she did.  My appointment was on Friday afternoon of that week.  As luck would have it, my oldest daughter was coming home from San Diego that Friday night to visit her grandmother, who was in town.  A Friday afternoon meeting with my team would mean that I would have a game plan in place.  Friday night, when we picked up Bree from the airport, we would take all the kids somewhere and let them know what was going on.  Not the kind of homecoming I wanted for her, but it's definitely not the kind of news I'd want to give her over the phone.  All three of the kids would learn about my upcoming journey in person, all at once.