Joys and Sufferings

About 2 weeks ago, my great aunt passed away. She was an inspirational woman - the youngest in a family of 9 children, one of only 2 of the nine to get a college education (my grandma was the other, and I am proud of that), a chemist who worked most of her life in a field of men. She never married (one of her serious boyfriends died on D-Day), but lived a life full of career accomplishments and travel - she traveled to all 7 continents and to more countries than Katie can probably count!

Aunt Del lived the last few years of her life with Alzheimer's, which was ironic for a woman whose life was filled with intellectual stimulation. I think it is also interesting that the men who cared for her and visited her in her final years were my father and uncles - sons of her older sister who passed away 25 years ago due to breast cancer. My grandma's sons lost their mother when they were still relatively young, and she was cared for by sons she never had.

Aunt Del was moved from Chicago, where she lived for most of her life, to an Alzheimer's care facility here, closer to her nephews. Also, she was 85 when she passed away, and had no children of her own, so her funeral was small - her 5 nephews, their wives, my two cousins, and my small little Lucken family. It was wonderful to celebrate Mass, and my great aunt's life, in such an intimate way, with my nearest family members. It was inspirational to see all of her albums and to remember her more for all of what she was in life, as opposed to the last years in which she was more affected by the disease.

One thing particularly touched me during the Mass, and that was the way the priest referred to life, its "joys and sufferings". I reflected that those two things are so often joined together when discussing a full life, so much so that when I hear the word "suffering", I almost automatically think of the word "joy". That got me to thinking about my life these days, and the hard days...for some reason I think I had lost track of the idea that joys and sufferings are so inherently linked. I've had a lot of joy in my life; so it makes sense that I would also receive my share of suffering - and why shouldn't I? Isn't it through suffering that you really come to know joy for what it is?

I'm not saying that people deserve suffering, of course, or that I am pleased that I or anyone has hard days. I am merely interested in the interconnectedness of these two words, these two states of being or emotions, whatever they are. Thinking about these two together helps to prevent me from thinking "why me?". Why not me?

Sitting at my Aunt Del's funeral Mass, I was able to look at my life more objectively when reflecting on her completed life's story and the legacy she left. I saw that maybe the fabric of my life would include a few more rough swatches, a few sufferings which maybe are not usual for a 34 year old woman - the death of my mom when I was still a child, this breast cancer diagnosis, treatment, and worry. I don't know what my legacy will be, and if I will have left a wonderful story as Aunt Del did, if I will live as many years as she lived. But thanks to Aunt Del, and the chance that I had to reflect on her amazing life, I now remember that every life is a complete picture when it is over, and that picture will include both life's joys and sufferings. It is only natural to have the hard parts if you are going to have the easy parts, and I accept that now!

**Here's an interesting story...Aunt Del's funeral was on Emma's last day of school, and her last day at Beverly Elementary, as she will be attending a different school next year. I was so torn as to what to do that day, because I wanted to be with Aunt Del's memory and with my family, but I also wanted to be there to pick up Emma on her very last day at a school that meant so much to both Emma and I for 3 years - to close that part of her life in the way we always do, with her mom picking her up and the same little traditions we have.

So I went to the Mass, as mentioned, but was sad about leaving at the end of it and not adding my car to Aunt Del's small funeral procession. I hoped Aunt Del understood, but I wanted to be there for my little daughter too, even if it was silly or insignificant to do that. So we left from Mass and went to pick up Emma, we parked the car like I do and I snuck up on her, picked her up and swung her around like we always did. We said a few goodbyes and then were on our way to drop her off at a friend's birthday party (a great way for her to forget that she was sad to be leaving her school and her teacher, as she certainly was) before we went to the funeral luncheon.

As we left Beverly's parking lot, I checked the rearview mirror and I was incredulous as I said to Bill, "I think Aunt Del is right behind us!" The funeral procession could have gone any one of a number of ways, and here they were going up this relatively small side street through the middle of Beverly Hills, at the exact time that we were going down that same street. I almost couldn't believe it, so I made Bill pull over to the side of the road, and sure enough - there went Uncle Bob, Uncle Jim, Uncle Mark, my Dad, and Uncle Kevin...hands out the window, waving to us! We pulled out behind Uncle Kevin and were able to follow the funeral procession for a few miles before we parted ways (I still can't believe the path that procession took, at almost every intersection they went our way when I thought for sure they would turn and go a different direction). I smile just thinking about it - the way I was able to share in this last little tradition for just a little longer, and to be there with my family. Was it luck, or was it a small kindness from someone in another place? :)


Night Out at bd's Mongolian Barbecue

On Wednesday, July 16th, our 3-day team will be hosting our 2nd annual dinner and auction at bd's Mongolian Barbecue in Royal Oak. Prices are $26.50 for adults and $11.00 for children, and include dinner, beverage, tax and tip. There are 2 seatings, one at 6pm and one at 8pm.

Bill and I will be there and would love for any and all of our family and friends to join us! I can't remember the time we went out to dinner last (sad, but true)...but we could make up for all of that in just one evening with the right company!

Email me (pamlucken@gmail.com) if you would like to join us...and let me know which seating you prefer. I am leaning towards the 6pm as it is the week after chemo and I might be tired, but if our family and friends end up preferring the 8pm we will do that instead.


4 rounds down, 2 to go...

I am becoming quite cavalier about this chemotherapy-business...on Thursday I basically just got in the car and found myself at chemo without my wonderful freeze spray, without my blanket, without just about everything. Since the arrival of darling Missy on the scene, I don't need to think about packing something to do, either! This last chemo was a very loud session of laughing, and when we were done with our infusions, we weren't even done talking yet.

I did spread out my talking a bit, though - we met a new young woman who had just had her first of 6 rounds of TAC (same regimen as me) the week before, and I was also sitting next to a young man on my left. The young guy and I had a nice conversation in which he tried to persuade me to try smoking marijuana to control nausea...I mentioned that I had 3 small children so I would stay away from it, but thanked him for his advice. He also mentioned that "It looks like you aren't having any trouble keeping the weight on" despite the chemotherapy! I didn't take offense as I know a) chemo can mess with your brain 2) cancer can mess with your brain and of course 3) marijuana can mess with your brain! I am amused at his frankness, though. And no, I am not having any trouble keeping the weight on; I never do!

Anyway, this round went better than all the others, I would say. I must be getting used to it, which is crazy. I didn't take any anti-nausea meds, aside from the ones they give me during my infusion, but that is just because I am crazy. I guess I just did not want to put any other drugs in my body, and I also guess I do not experience nausea like the average person, as I wasn't any worse than I was last round, or even the first round when I was taking all the meds. (I wonder how often the anti-nausea meds make people feel worse than they would feel if they took no anti-nausea meds?) What I did do was drink lots of water, slept a lot, and walked a lot... I'm exceedingly lucky to have my sister Amy around to help provide care for my children, and Bill, and Sybil who took the kids for Thursday and Friday morning.

Also, I really, really tried to be more positive this time...to control my thoughts and to keep them away from how I was feeling. That is hard to do, when you are being poisoned and it feels all disgusting like poisoning would feel... But, a fellow 3-day walker/cancer survivor sent out a great quote in an email recently, and I totally took it to heart, especially during this hard time : "Life isn't about waiting for the storm to pass. It's about learning to dance in the rain."


I just love it when my life returns to such a state of normal that I feel like I have nothing to write on the blog! It seems now like that happens somewhere between a week to 1.5 weeks after a treatment. For about the first week I have physical reminders of the treatment (the last 2-3 days I just know about it from being a bit more tired and having a yucky, almost fuzzy taste in my mouth, so it's not bad, just a reminder). For the next .5 of a week, I shudder to think of doing it again, even though I have no physical reminders. Then, the badness fades away, like memories of childbirth just fade away, life goes back to normal, and I feel like such a regular person, doing my most regular things, albeit at a more frantic pace.

The frantic pace is due to the fact that I am overcompensating for the week I halfway miss due to chemo - and I know that I could (and maybe should) let other people just take over and help, but I can't quite do that. This is my life and I just want to live it, and if I have to cram extra work into 2 weeks so that I still feel like I own my life in the week I am having a harder time, then I will do that.

The problem is, I have a bad feeling that I am overcompensating with my children, and I don't know exactly what to think about it - is it wrong, is it right, should I stop, should I continue? Here's one example - I've lately been obsessing about having everything together for things like swim meets, birthday parties, I want to be at every activity, etc. I think I am doing this because I feel like 1) my kids have enough to worry about, if they think about it, and spend enough time with a mom who is not quite functional, so when I am able to do something for them, I really want to do it well. Also, 2) I don't want people to feel sorry for me, or to think I can't quite pull it all together because I am going through cancer treatments. I want to have everything just right to prove that I CAN do this. But worst of all, 3). In the back of my mind (and I am ashamed to admit this) I wonder how much longer I will be living and I want to do a great job while I'm here. I am trying so hard to think positively, to reshape my thinking and to make myself believe that I will live to be 90 years old...but I also want to have my bases covered just in case I fail with my goal of living to 90!

So is it wrong to be obsessed with being a (more) put-together kind of person? Am I creating unrealistic expectations for my children at a time when I should be teaching them how to be flexible and to figure some things out for themselves? (I'm mostly talking about Emma here...Katie and especially Nathan are still little enough, but they also have spent enough time with me lately that they know about all the work that goes on to make everything come out just right - Emma is at school way more and she tends to think things come together like magic.) It was always my goal to raise children who were flexible, who didn't expect I was going to do everything for them, who knew how to do things for themselves and took pride in that. I'm worried that with all my obsessing and preparing and mom-ing, I am getting away from those goals.

On top of the philosophical issues here - how much should I hold my 8.5 year old's hand through everything and how much should I expect of her to do for herself - this "put-together mom" is kind of a departure for me. In the early days of motherhood, I would meet with our playgroup friends in Plymouth for music in the park, and I remember Emma asking me if sometime we could bring a big diaper bag, filled sippy cups, and a blanket. (She was probably 4 years old at the time!) Apparently a few things shoved into a bag wasn't enough fuss for my eldest child. I HAVE pulled things together a bit more through the years, but I still had not reached the point where I really felt like a mom who was fussing over her cherished child all the time.

I am definitely fussing over my children more now...is that wrong? Is that to be expected? Is this just happening for this short period of my life - once I feel more confident that life is getting back to normal will I stop spoiling all of them? (And spoiling myself, too...because I know I am fussing because it feels good to me to be a mom.)


OK, I take it back

I'm not really a bad-ass at all, and I'm not even sure I want to be one. It is so like me to flip-flop in less than 24 hours, but sometimes that is how it goes - I make a grand statement and then decide it doesn't quite fit. I should think these things through before I make the grand statement, but I'm not that evolved yet. I think as I go, or sometimes after I go!

Here's what I do think, though...I like that the bald head softens things around me. I like to see it change people, to soften them. Today I am almost certain it worked again - a worker at a smoothie shop was all upset and fierce with her customers, but it did seem like she calmed down once she saw the head.

I also am glad I am coming to terms with the new look. I'm not as intrepid as some of the brave women I know who are fighting or have fought their cancers - my new friend Missy is a real inspiration with her view of her head (she calls it her beautiful head, which it is), my friend Nancy was very cool with her baldness, and a woman at Katie's school made her head accessory choices really, really fun for herself. I think it is 0k that I am not as confident, though, and that is a step for me to accept myself for not being quite as great as the others!

I am very warm in this 90 degree weather, though...and also, though I am not as happy with the bald head myself, I am caring much, much, much less about what others think about it. I have had such great responses from my interactions with kids, that I am able to worry less. I went for a walk last night (ok, it was totally dark - 9:30-11pm was pretty late, but in the summer, it is so nice to walk when there is no sun...anyone want to join me?) but I walked bald and it felt so nice to feel breeze on my head!



I'm pretty sure I might never like my bald head much, except that I kind of like what having a bald head is doing for me! I find it brings perspective to all kinds of situations, as much for other people as for me. I like watching people be all serious about their own lives, and then look at me (the best is when I bring all three kids with me!) and their facial expressions change, and not in a bad way.

I also think I am almost becoming a bad-ass, in some ways, and all due to my bald head. Before baldness, I would often be nervous about doing the wrong thing, saying the wrong thing, being somewhere if I wasn't absolutely sure it was appropriate for me to be there, stepping out of line. Now that I'm bald, though, I almost wish someone would mess with me. I'm walking into situations not nervous if I should be there or not, I don't even care who I talk to or what I say, who the person is, what they have done with their lives that I maybe have not yet done with mine. I'm the bald girl with something really wrong with her (or so a stranger might think, they don't know it was only a stage 1 cancer) and there is something about being that person that makes me stronger. I hope I keep that bad-ass feeling with me when my hair grows again.


You need a time-out!

I was wondering if it was really useful to be putting Nathan in time-outs for his bad behavior (hitting and scratching and screeching at his sisters), but I figured since he stays in the time-out, he must understand it to a certain extent. I might know better what to do and how to discipline my children if I read a parenting book, but I gave up on that when Emma was about 4 months old (that explains why my children act like they do, I'm parenting on the fly).

When he looked at me this afternoon and very sternly (and loudly) said to me, "Mommy, get in da tair!" I realized that yes, he does understand time-outs, and boy does he know how to administer them! I got right into that chair. (not really)


A good thing to remember

(From a forwarded email message, I only took the parts that I were applicable to me since this is my blog!)

"You'll cry because time is passing too fast, and you'll eventually lose someone you love. So take too many pictures, laugh too much, and love like you've never been hurt because every sixty seconds you spend upset is a minute of happiness you'll never get back. Don't be afraid that your life will end, be afraid that it will never begin.

Sometimes emotional email forwards are good to read...

Small Miracles

I'm a definite believer in miracles, angels, and God. I can't decide if I believed in such things so strongly FIRST, and then had experiences that made me believe even more, or if I had the experiences first, and then believed. I think, after writing it out, it must have been the former and not the latter. In any case, I've had some pretty amazing, fascinating things happen to me over the course of my life - supernatural sorts of things that I can't rule out as anything other than the work of God, or angels (in another word, miracles). They were very SMALL miracles, mind you - nothing terribly significant such as people coming back to life or spontaneous remission of disease - but they were really meaningful moments in my life at times when I needed extra support (and I only know of 3, over the course of my whole life, so there weren't many). I'm not going to write about the old miracles here, but if someone needs to hear of them, I'm happy to meet you and tell you about them!

In writing this, I am now sure that it was my faith in God that helped me through the death of my Mom. I was 12, so it was the time of thinking of grander schemes like the afterlife, especially if death is something that touches you so personally. I had been raised Catholic, but at 12 you think things through for your own self, also. During that hard time, I decided that since none of the living people on earth had actually died yet, they couldn't tell me that there WASN'T something after this life. I could believe what I wanted, and since it was a nicer belief, I believed that God had taken my Mom to a better place. I also decided, and repeated this to myself over and over so much that it still sounds like I am repeating from my 12-year old self, that "Everyone has a purpose, and she must have fulfilled hers early." It was a comforting belief.

I BELIEVED that my mom had a purpose, I tried to still believe that I had one too, after my breast cancer diagnosis. Perhaps I had this scare, and my purpose was connected to it in some way. God would use this to teach me some lessons, and maybe I can help people through my challenges. I don't think I really started to question my thinking (or maybe not question, but be sad with the situation) until I found out that I have the genetic mutation in my BRCA 1 gene. It was at that point that the sad thoughts started really pouring in, because having the genetic mutation seems more sinister than just having breast cancer. My genetic code isn't behind me, trying to stop tumors from happening. What does it mean that God chose to give ME this expiration date from the very beginning of things? Even my grandma, who ostensibly passed this gene on to me, lived to her 60s, had 6 children, and saw some of her grandchildren. Why was this not only my genetic destiny, but why did this happen to me at 34? God not only wants to get rid of me, but my body won't even support me in this. God went to greater lengths to get rid of this one!

So I started to challenge my belief that everyone has a purpose in life, because I don't want part of my purpose in life to be dying early. I already lived through the early death of my mom, and though there are blessings that did fill up some of the void of being a motherless daughter, I DO NOT want that to be the life of my children. I don't want my husband to lose his wife early, either. In my heart and from my experience I know they could still live lives filled with blessings, but there is also a fair amount of misery and loneliness to get through first and the thought of them having to go through that is too much for me.

I wouldn't go so far as to say that I was angry with God, even though I felt like my belief was being challenged. I mostly felt overwhelmingly, overwhelmingly, sad. It's hard to suddenly maybe not believe in something you've believed in for 22 years, but it's worse to think you're going to die early and leave those you love the most.

I didn't know what to think, but also, I wasn't thinking much at all - the thoughts were probably all just unconscious, under-the-radar thoughts. In my everyday life, I'm pretty sure I barely think at all - I spend my day doing things, cleaning things, or just talking to kids. Higher thinking only goes on in my brain when I'm talking seriously to other adults (and since I am horrible at using the phone, and almost always nervous when talking in person, that is just about never), when I'm erging* (and I was on erging haitus after the surgery, and still am not up to enough meters to get into a good thinking zone. And by the way, I never erg hard enough to get past the thinking zone, so that explains why I am never in good shape even though I like erging so much), or when I'm writing. (This explains why I need the blog, if there was ever a time for one, it is now, otherwise these thoughts would just stay way down deep inside and make me miserable.) I mostly only know if I'm overwhelmingly sad once the sadness becomes so serious that I can't even move anymore and I have to think my way out of it.

I was in this sad place on the Monday after my second chemo treatment. I didn't have enough energy to do anything or keep busy, I knew I was sad but I couldn't do anything about it. I felt like God did not want me around, and I didn't want me around much, either, since God didn't seem to have a use for me. It was a seriously low point...but then, a small miracle! A coincidence happened that is almost too coincidental to NOT be a small miracle. It seems silly to write it down, but I will anyway...just please don't comment on this if you aren't believing in my small miracle, because I am happy having it be one. It wasn't life changing, it was even more subtle than the other things that have happened in the past.

Here it is - the acupuncturist recommended something to help pull me out of my black mood (I wasn't sure, still don't know if it worked or not), and just before I got home from the acupuncturist, a friend named Laura dropped off that very same herbal treatment on my doorstep...she had gone to the store, and someone there recommended it for me, but the timing of it all was uncanny. The recommendation and the drop off happened at almost the same time.

Also - I have only met Laura twice in real life, at a book club. She's not someone who has become attached to me through years and experiences; she is just an incredibly generous and loving person, a woman with 4 busy and special children at 3 different schools, who is taking time out of her day to think about the random acquaintance that is me, drive to the store, talk to people about what I might need, buy those things, drive all the way to my house, drop things off on my doorstep, and then drive back to her house where she sends me an email that she dropped something off (because she never even rings the doorbell, she doesn't want to disturb me, though she has spent at least an hour and probably more, thinking of me).

Anyway, for me the thing that makes a miracle a miracle is NOT the coincidence that makes you wonder, but the feeling that comes after it happens. When I opened the bag and saw that this "Rescue Remedy" was inside, I did wonder at the coincidence, but I also felt some sort of strange relief from my sadness. I had a feeling that God wasn't so upset with his creation (me) that he had to get rid of it early, I felt like I wasn't worthless to God, or to the earth or to my fellow humans (because part of me knows my family would be fine without me, and since I spend my whole life taking care of them, what does that mean about my worth as a person?). Here is possibly one of the busiest people I have ever met, opening up herself to my problems, and worrying about me, not only just when it fits her schedule, but on the day that I needed it the most. It just seems miraculous, and with the few things I know about Laura I feel like God did pick her to send me a message, and she did, and I am so grateful. If I could be worthwhile to Laura, then maybe I am worthwhile to others who know me even more, and maybe, maybe, I am worthwhile to God. That's a relief.

*Erg is what rowers call the specific rowing machine they use, made by Concept 2. They are called indoor rowers, or rowing ergometers.

**I've been trying to figure out how to write this whole thing for 3 weeks, and didn't even know how to begin to open this thought process in my mind, or how to put it in a way that it could show people that God (or a higher being, if you aren't a person who talks or believes in God with that name, per se) does have a hand in things on this earth. I wish I was even better at expressing this, but today the need to get it all out became even more desperate as Laura left ANOTHER bunch of presents on my porch. I feel I have to write about this, even if I bungle it, just so that God will tell her, it's ok, don't spend any more money on Pam! because though the presents are so wonderful, I want her to feel some relief from worrying about me. I will always feel like Laura was part of a small miracle, I will always know that she is a gift from God to her fellow people (especially me), and I will always be in awe over the small and wonderful things that happened.

***In writing this, I remembered that I do truly believe that God loves people that are imperfect in human terms, and I think it is sometimes even easier to see the love of God through the imperfection of humans. So then I wonder, why did I feel so unloved when smacked right in the face with the evidence that I am faulty and imperfect? I'll have to think about that later, as I've been putting off lunchtime for two very hungry little kids!


She's coming back to life...

I think I did this last round of chemo as well as I could have done it, and the best of any of the rounds so far. First of all, I tried to stay optimistic. Secondly, and maybe most importantly, I decided to NOT take one of the anti-nausea drugs (Decadron, a steroid) though the nurses and my oncologist did not recommend that. I felt a little more queasy this time, but it was never serious, and I avoided some of the nasty side effects like the miserable black depression, the insomnia, the constipation... I think that some people experience nausea worse than I do, because without the extra drug I was more nauseous but I could still eat and didn't vomit, etc. Walking helped so poor Dagny walked a lot on Saturday with me, and sleeping helped so I took a 3 hour nap!

I also had the joy of having my little nephew here for the first days of chemo, and my niece here for the last days of the fallout, so that may have tempered the misery somewhat (and my amazing sisters and brother-in-law). I do really wish I was feeling GREAT when I had the chance to see them, and not yucky and tired, but I'm happy to have the chance at all, and I'm incredibly glad that1) the babies won't remember me being yucky and tired and 2) they aren't scared of my bald head. Emma, Katie and Nathan had the best time with their family...it has been such a blessing to have my sisters and their families around!

I even managed to see Emma at her Middle East feast (My sweet husband went to volunteer in my place! It was so cute to see him there), to be at girls' first swim meet (on Friday night, no less, which isn't an easy night for me), and to hold my nephew on the yucky Saturday, which believe it or not, is a huge accomplishment for yucky Saturday.

- Let me take a little break here to say how proud I am of the girls for their first swim meet of the season, and I'm especially proud of Katie! It was a stretch to put her on the regular team this year, and I knew that but right when I was supposed to be getting her some lessons to be ready for the team I got my diagnosis. I still wanted her to try to be on the team, though as 1) it is fun, and a great way to see other kids and get exercise in the summer 2) she has to go to everything anyway because Emma is on it, and 3) I can't be at the pool all summer, with my bald head and one fake breast, and every 3rd week being a chemo week - so pre-team wasn't an option for her with it's later practices. Anyway, I watched her hang on the wall all week, but when it came time for her races she made it down the lane and got out of the pool with a smile on her face!

So anyway, it is now Tuesday night and while I don't feel perfect, I at least made it. It wasn't as horrible as it has been (chemo week), but let's just say that I really want to vomit if I even think of the oncologist's office, or the IV's, the syringe of horrible red adriamycin is causing me bad flashbacks, and I wouldn't wish TAC chemotherapy on my worst enemy, if I had one. I'm just going to hope to live the next two weeks like I DON'T have to do it again. It's a little bit of a challenge after feeling so dead, to not think of myself as a cancer patient*, or to feel a little sorry for myself! Luckily my aunt reminded me, when I needed it the most, that I'm doing this for insurance, that I'm NOT sick. I should go tell my neighbor that I AM going to make it, after all.


Thank you to Gus and Martin!

Pat and Kathy Westerlund's nephews, Gus and Martin, participated in the Susan G. Komen Race for the Cure this weekend...Gus wore my name on his sign, and Martin wore Nancy McIntyre's name! If I can figure out how to post the picture, I will post the picture of these wonderful boys...
I think I have a tie for the WORST COMMENT said to me about my breast cancer diagnosis and treatment! The WORST comment (makes me feel better to put it in all caps) was said to me at Emma's First Communion. I believe the person was trying to wish me well when she said, "I hope you make it to ALL of your children's First Communions." (I hope so! Katie's is only 2 years away!)

Here's the newest comment...from a neighbor (distant neighbor) I met today. She was encouraging me to tear out all of the buckthorn in my yard (invasive species) and I mentioned, since I'm sure she saw I was bald under the baseball cap, that I was going through chemo this summer and that I would be doing my best, but probably wouldn't tackle it all this summer. She said she was sorry to hear it, and asked me, "Are you going to make it?" (What I wish I could have said was "I think so, are you?")