Life, Death, and Everything in Between

This post is in honor of National Hospice and Palliative Care Month, which ends today.

I wasn't always passionate about palliative care, hospice, and end-of-life issues. In fact, I distinctly remember a time when I was very much on the "do whatever necessary to keep someone alive" bandwagon. When I was in high school or college, my maternal grandmother told me about her "living will" and desire to not be resuscitated if she stopped breathing. I was horrified. She was in her late 70s and in fairly good shape for a woman her age, but she did have a heart condition. In my youthful arrogance, I imagined myself ignoring her wishes, doing CPR anyway, and having her thank me when she woke up because...why, I don't know.
My views on that subject began to be more flexible when I went to seminary, which tends to be a time of examination and reformation of values, anyway. As I formally studied ethics for the first time, I began to become a little more open-minded. During my final semester of seminary, the Terri Schiavo case was front and center in the news, and there was a lot of discussion in our community around that issue.

However, it wasn't until the summer after I graduated from seminary that my current passion for end-of-life care was kindled. As part of my requirements for ordination, I did a unit of Clinical Pastoral Education at a local hospice. (In case you're not familiar with Clinical Pastoral Education, or CPE, it's basically supervised chaplaincy work, reflection in groups and one-on-one with a supervisor, and teaching seminars.) Over the next ten weeks, I learned so much about intentional living and dying, quality of life vs quantity of life, and the courage it takes to stop curative treatment, accept the end of your life is near, and do whatever possible to die on your terms. I was able to walk with several patients and families on that journey. One of my favorite memories was spending time with Charlotte, a patient with terminal cancer, the day before she died. We had gotten to know each other fairly well, and it was both painful and rewarding to pray with her and tell her goodbye, knowing that the next time I saw her would be in heaven. She died on her terms; surrounded by family in the inpatient hospice unit.

The phrase "dying with dignity" is often tossed around by those of us in "the business", but it's really a misnomer. Dying, in and of itself, is completely undignifying. After all, by the end you lose control of most things and are totally dependent on other people. I think a better phrase is "dying with as much dignity as possible", but I guess that doesn't sound as pretty.

The fact is, one of two things are going to occur: either Jesus will come to us (i.e. the Second Coming) or we will go to Him (i.e. death. I'm not preaching universal salvation; I'm simply saying that I believe we will all have our five minutes with Jesus before going to our final destination). Unless Jesus returns in our lifetimes, WE ARE GOING TO DIE. Moreover, we don't know how or when that will occur. I may be only 34 years old, in good health, and live a low-risk life, but I could die tomorrow or I could live another 60 years. Or, something could happen and I could receive devastating physical and/or mental injuries. I don't know the future, and neither do you. Only God knows the future.

Therefore, it makes complete sense to me to make some preparation and do some reflection on the future, and I encourage everyone else to do the same. First, everyone over 18 should have an Advance Directive (click on the link for more information and a way to download one that meets your state's guidelines). If Terri Schiavo had had one, then the whole fiasco over the feeding tube probably wouldn't have happened. Second, you should discuss with your family (parents, siblings, spouse, or children depending on your place in life) what your wishes are in regards to artificial life support, organ donation, and the like. That way, if you can't communicate your wishes, your family and Advance Directive can do it for you. Third, think about what gives your life the most meaning, and what you might be willing to give up in order to prolong your life. For example, my mother had to "back away" from some things she's been doing for years and LOVES, because of the time commitment and side effects of her chemotherapy. However, for right now, she feels that it's worth it to give those things up in order to have a fighting chance to have more years with her family (not that it's my decision to make, but I agree).  Finally, if you're over 60 or have a major health condition, I would also have a funeral home picked out and (if you're not a part of a local faith community), have an idea of who you would like to do your funeral. There have been so. many. times. when I have worked with a family whose loved one is dying/unable to communicate/just died and they are lost as to what to do, what the person would have wanted, what funeral home to call, etc. Advance planning, as difficult emotionally and logistically as it is, can make things so much easier when the moment comes.

And if you can afford it, get life insurance for yourself each member of your family. It's not uncommon for funeral expenses to run past $10K, so I would recommend at least that much, if not also enough to pay for outstanding medical bills, joint debts (if you're married), and any other transitional expenses.

My grandmother died in July of 2009 as a result of her heart condition and injuries resulting from a fall a few months prior. She simply went into cardiac arrest, and since she was a DNR (Do Not Resuscitate), that was that. I was not with her when she died, but if I had been, I simply would have held her hand, told her I loved her, and let her go*. Because it was what she wanted, and it was the best way for her to die with SOME dignity.

*Not that it would have been my decision. She had actually made my cousin Mike her power of attorney, so he would have made the decision. But you get my drift.

I'm jumping off my soapbox now. I could write another several paragraphs, but your eyes are probably already glazing over. (: However, if you ever have any questions or comments, leave them in the comments section below or e-mail me, and I'll be happy to either answer them or point you in the right direction. I'm not an expert by any means, but fairly well-informed and very passionate on this subject.

Perspective and Giving Thanks

About three hours ago, I was feeling somewhat grumpy. Our Thanksgiving dinner had gone very well (and been given rave reviews), been eaten, and the leftovers put away. The dishes had been washed, and my parents and brother had already left. But I was feeling out of sorts and not really in the holiday spirit at all. There were reasons for that feeling, of course. Very valid reasons, as a matter of fact. I'm not going to focus on them right now.

I decided to take a break and checked F*cebook. One of the first status messages that cropped up was from my mom:  "We had a delicious dinner at chez Money with great food and great company. It was a lovely afternoon. We have so much to be thankful for."

Talk about a reality check and reminder. After all, that statement came from a woman who just this year has experienced a life-threatening diagnosis, four surgeries (five, if you count the port-fixing one) in three months, and is five months into an indefinite chemo cycle of two weeks on, one week off. Her life has been totally changed in the past nine months and (realistically speaking), will never be the same. Yet she can come up with that sort of statement. If she can have that sort of attitude of thanksgiving, then I can, too. After all, one of the main reasons I was feeling like a "Thanksgiving Scrooge" was because I was worried/upset about the effects of the chemo on her well-being (which is going very well, but it's not without drawbacks, of course).

 So, I began seeing things in a better light. After all, I had my entire immediate family with me for Thanksgiving. Both of my parents are alive, and live thirty minutes away from me. Ditto for my little brother. I have a husband who loves me (and who can cook a fabulous meal) and two beautiful, HEALTHY, and charming children. I have a full stomach, live in a lovely home in a safe neighborhood, and all my needs (and most of my wants) are provided for. It is highly likely that this weekend, I will get to see one of my dearest friends, one whom I haven't seen in two years (she's one of those wonderful college friends I mentioned in an earlier post, and she lives about eight hours away). Most importantly, I am a creation of the Most High God, whose love is so high and deep and wide that I cannot begin to fathom it. 

And then I got a call asking if I could possibly be on-call tonight, and the gratitude my fellow chaplain expressed when I said "yes" warmed my heart (and the opportunity to earn money helped, too).

And THEN, while I was reading her a story from her kiddie Bible, Susanna said "I have to go potty" and she ran to the bathroom, sat on the potty, and PEED IN THE POTTY. People, that is monumental. It makes me think that she's finally "getting" the whole potty training thing, and she may indeed be potty trained before she learns to read.  

So tonight, I will go to bed feeling grateful. And all it took was a quick peek at F*cebook to get the perspective needed to be grateful. 

Happy Thanksgiving!  

Seven Quick Takes, Quick-for-me Edition

1. Today James and I had a date, our first one in over a month. We went to see "Harry Potter and the Deathly Hallows, Part 1". I highly recommend it. I think it stayed very true to the books and ended at just the right point in the narrative. We contemplated going to see it in IMAX, but decided to save our money and see this installment at the regular theatre. However, we plan on seeing "Part 2" at the IMAX theatre, because it will be in 3D.

2. After the movie we had "lunner" at Olive Garden. The movie ended around 3:30 and we really hadn't had lunch (unless you count the ridiculously expensive popcorn), so we dubbed our meal "lunner". After that we made a quick trip to Home Depot to look at knobs for the cabinets and drawers in the kitchen and bathrooms. We found one that both of us like, so James may be going back later this week to buy them.

3. I think that the check I wrote to the baby-sitter may have been almost as much as what our tickets, snack, and meal cost. Baby-sitters are expensive! We love ours (she's 16, lives on the next corner, she's very responsible and resourceful, and our kids love her) and we pay her the going rate, but she makes almost half my hourly rate. Isn't there something WRONG with that?

4. Incidentally, we've only recently had to start paying a baby-sitter. My mom used to always baby-sit Susanna when we needed a date night/afternoon/overnight. It's not like it was every week; more like once a month at best. However, since the Unwelcome Visitor (breast cancer and the four surgeries and chemo that have followed) arrived, Mom hasn't been as available as she used to be (which is OK, because the surgeries and now chemo treatments are hopefully ensuring that she will be able to watch her grandchildren grow up. It's a trade off, and I'll take it.) She still helps out; she watched them overnight for us when we went to a wedding in Richmond last month, transported Susanna from preschool to daycare for me two weeks ago, and took Greg for me one night so that I could get a few nights' sleep. We just realized that we couldn't keep riding the "grandma gravy train" forever.

5. Remember my how part of my "grand plan" for saving money on clothes was to sell Susanna's outgrown clothes via consignment? That may not be as easy as I thought. On Tuesday, I (along with my two sidekicks) took a box of mint-condition clothes to a local consignment shop that pays cash for secondhand kids' stuff. The lady looked through it...and bought a pair of shoes and a sweater. I chose store credit, so I now have...$2.40 in store credit. She handed back the rest of the box, which included a girls 2T winter coat (I would think that would be a hot item, but I guess not). I have a few other places I can try, and several more boxes of clothes, but I may be looking at either Craigslist or simply donating them.

6. James and I are planning on going "Sunday School class hunting" tomorrow. We haven't been part of a small group/Sunday school class in years. When we were in Lexington, we had a wonderful small group. I still miss them, four years later. When we moved to Danville, the church I was serving really only had one adult Sunday school class, and James didn't like the style (it was more lecture than anything else) and I liked using the time for last-minute sermon and worship prep. When we moved here, we didn't really try to find a class at the first church we attended (none of the Sunday School descriptions sounded interesting to us, and my schedule made weeknight evenings difficult). We've been at our current church for almost a year, but haven't made much of an effort in that area. Sad, I know, especially for a clergy person! So, we're going to begin making it a priority, for our relationship with each other, with God, and so our children can go to Sunday school.

7. I'm on-call tonight, and hoping to actually get a page (or two). I had a "Pager Palooza" weekend over Halloween (meaning I had four on-calls and one full-day shift in four days) and made loads of money, but I've had four on-call nights since then, and my pager has been silent for all of them. I take calls from home (so it's not like I'm away from home) and do get a pittance ($1.50/hr) just for carrying the pager, so it's not like I'm spending nights elsewhere and having nothing to show for it. However, my next paycheck is going to be on the light side. Thank God that I'm not the primary breadwinner!

Hope you're having a great weekend!

Part 2 or The Part Where I Share My Feelings

If you know my mom at all, you know that she did not simply tell me, "I have breast cancer. I'm having an MRI tomorrow and major surgery right around your due date, bye!" Of course not, because my mom is much more...maternal and selfless than that. After giving me some details and answering some of my questions, we spent at least fifteen minutes discussing something else, namely how the heck James and I would handle the whole childbirth, hospital, and first few days at home since our plan had now been shredded to smithereens.

I have no doubt that Mom was upset/worried about the deadly disease coursing through her body, and that her birthday had been RUINED (she had just heard from the oncologist that morning). However, outwardly she seemed much more concerned about how we were going to cope and about brainstorming ideas, most of which involved calling James' mom as soon as I knew this was "it" and hiring someone else to stay with Susanna until James' mom arrived here (she lives 4-5 hours away). We also discussed me pleading with my OB to induce a week early.


We ended the conversation not really resolving anything, but agreed that we had plenty of time AND I kept reminding her that LOTS of people give birth without having families nearby to support them. If they could do it, so could we.


So, in my mind, my thoughts for the next few hours sort of went like this (interspersed with crying jags, of course): "My mom has cancer...she's having major surgery right when I'm supposed to have my baby...this isn't fair, I want my Mommy...calm down, Patti, it's just a few weeks, you'll get through it...right, after all, I can get through this...it's just temporary. Gotta think of the long-term, put everything in perspective...Stop being so selfish...After all, she's the one with cancer and facing major surgery...HOLY CRAP! My mommy has cancer! People die from cancer! She might die! I can handle her not being around for a few weeks, but what if she DIES? MY MOM CAN'T DIE! (Ignoring the fact that I have a husband and numerous friends who have already lost a parent) My children have to know her! Deep breaths...calm down...this is breast cancer which has a much lower mortality rate than say, pancreatic cancer. Mom had a clean mammogram in August, this was probably caught early. She'll have the surgery, maybe chemo and radiation, and chances are that by this fall, it will all be over. Right. Be positive." What also helped (and continues to help) is the knowledge that Mom is no weak sister. She is a fighter, a survivor, and if breast cancer does kill her eventually, it will not be without her fighting it with all she has in her.

By the time James got home several hours later, I was mostly in control of myself. The next day, we found out that Greg would be coming two weeks early, anyway, so that issue was resolved, and Mom's exclamation of "God is good!" when I told her that news was priceless.

So, the spring was kind of sucky (most of all for Mom, since she was the patient) because it was (in my eyes, anyway) a roller coaster of good news, bad news, and the accompanying emotions. Mom has the rarest, most aggressive kind of breast cancer possible. It's actually highly irregular for a Caucasian woman in her 60s to get this type. But Mom's always been an achiever, and our family tends to be "health care trendsetters", anyway. She had four surgeries in three months (I'm going to respect her privacy and leave out the details) and began chemo in June. She's responding well to the chemo, and is part of a clinical trial for a promising new chemo drug. Things aren't the same as they were a year ago, but I'm adjusting to the "new normal" and thankful that between God's grace and healing, the miracle of modern medicine (and the gifts of her oncologist), and Mom's own strength and determination, there is s a very, very strong possibility that Mom will be around long enough to see my children grow up and most importantly, for them to know her, make memories with her, and remember her when she does die, whenever that may be.

I will probably continue to write about this from time to time. Keep in mind that I'm writing from MY perspective, so I'm not speaking for my mother (I can't do that, since I'm not her). My posts will likely be about my thoughts, feeling, and experiences, and will have very little actual details about Mom. If you want details, ask my mom. Ditto for wanting to know her perspective on things. I'm not planning on giving any blow-by-blow accounts of her condition without her express permission.

Of course, Mom covets your prayers, as does the rest of my family. Prayers are always welcome.

So what if my day was ruined? It was her BIRTHDAY (Part 1)

It was January 27, 2010. My mother's birthday. I was 36 weeks pregnant with Greg, and had a hankering for Taco Bell. So, I loaded Susanna into the car and drove through Taco Bell to get a double decker taco with guacamole and no tomatoes. I was pulling out of the drive-thru when my phone rang. I saw from the Caller ID that it was my mom. I answered, wished her Happy Birthday, and she asked if I was home. I said no, that Susanna and I were out and about. She asked me to call her when I got home. I agreed, and we hung up.

Immediately, my brain went into overdrive. My mom and I frequently talk on the phone while in the car, so her wanting to wait to talk until I got home meant that SOMETHING WAS UP. I latched onto the real possibility that she had bad news to tell me, and spent the next fifteen minutes (as I drove home and then put Susanna down for a nap) wondering what was wrong. Obviously not an emergency involving her, my dad, or my brother. If that had been the case, she would have told me immediately so I could head right to...wherever. My dad would probably be the one of call me if it involved him. Was something going on with Bart (my brother)? One of my aunts or uncles or cousins? A close family friend? I didn't really think about the possibility that what my mother had to share involved HERSELF. After all, she was in great health, exercised, ate well, and looked and acted like someone 10-15 years younger than her true age. I had no doubt that she would live well into her 90s and be around to watch my children grow up, maybe even be able to see Susanna and Greg get married to their respective spouses and meet her future great-grandchildren.

Within five minutes of calling my mom back, those expectations were suddenly and excruciatingly colored with doubt. Mom told me that she had breast cancer and was scheduled for an MRI the next day and a mastectomy on February 25, which just happened to be the day after my due date.

Once we hung up, I spent the next hour sobbing uncontrollably, and even once I calmed myself down, I cried on and off for the rest of the afternoon.

(To Be Continued)

Seven Quick Takes Friday, Long Overdue Edition

1. Hi out there (waves and smiles guiltily)! OK, so it's been a while since I've posted. Probably all of my readers have stopped checking the blog and given up on me. But I'm back! And I have at least three future posts brewing! And maybe more! So, there. Come back, blog readers, come back!

2. Part of the reason that I haven't posted in so long is that I now have two children. And as those of you with two (or more) children know, 1+1 DOES NOT = 2. No, it's more like one plus one equals 20, or something like that. I had no clue how EASY my life was with only one child. Just like I had no clue how easy my life was before I had children.

3. In case you're curious, we are DONE with the procreation thing. I love Greg and Susanna, thank God for them every day, and am so delighted that we had two children. However, James and I mutually decided that for us, two children was enough. And that decision was made final in June at a urologist's office in Virginia Beach. (:

4. My children are very similar in some ways, but very different in others. They clearly resemble each other, are both somewhat stubborn, and have excellent appetites. But there are plenty of differences...An example is the sleep issue. Susanna was sleeping eight hours at night by the time she was six weeks old (don't hate me, please). I did not expect Greg to do THAT, because it's pretty rare. He did show promise, though; he was sleeping ten-hour stretches at three months. However, that screeched to a halt at the four-month mark, when he decided that it was way cooler to sleep for only two or three hours at a time. He's gotten better since then (we regularly get at least a 5-7 hour stretch each night), but I spent most of the summer in an exhausted haze, chugging Coke like it was water and craving sleep like an addict craves their next fix. It's a good thing he's cute and smiles adoringly at me several times a day. He's a happy baby, although his first few months were tough due to infant reflux. He still takes medicine for it, but it seems to be much more controlled now.

5. Besides the two children thing, this winter/spring/summer has been somewhat emotionally stressful for me and my family because someone I love dearly was diagnosed with a MAJOR HEALTH ISSUE in January. Two weeks before Greg's birth, as a matter of fact. I'll talk about that later, in much more detail. Don't worry; no one is dying (as far as we know).

6. I'm still doing my very very part-time chaplain gig for Bon Secours Hampton Roads. I love the work, I love the chaplains in both Spiritual Care departments (I work at two hospitals), and I love the hospitals themselves. The facilities are not nearly as nice as those at Riverside, but I've found that the staff is friendlier, more caring, and generally has a much higher view of chaplains than at Riverside. I'm seriously considering staying in the chaplaincy field and not going back to the local church. Problem is, the job market for chaplains is kinda tight, especially if you want to stay in one geographical area (which I do).

7. Susanna turned three at the end of August and started preschool a week later. She's attending a preschool run by our church, and we've been very pleased so far (and she loves it, which is also important). She is talking a blue streak and it seems like her vocabulary doubles every day. She is still not potty trained, but we're working on it and know that it will happen someday, and hopefully that someday will be soon! My parents say that she is the "spitting image" of me when I was her age. Susanna is, however, much much taller than I was. She has never gone below the 75th percentile for height, and at her three-year checkup was 39.5" tall and 36 lbs (both 90th percentile). She wears size 4 clothing easily and we're probably going to have to convert her bed from the toddler bed to the full-size bed (she has one of those convertible cribs that is currently in the "toddler bed" mode) within the next year.

And that's all for now, folks! Have a great Friday!