Here's what she wrote:
"If I could choose anyplace I could live I would choose to stay here. But if I could go on vacation I would go to Chicago or California to see my aunts. Let me tell you about my house. It would have comfy pillows and pretty carpet. I would live in the empty lot down the court. It has a big back yard with these bucks that go sleep there. The house also has a stream. Also it has a little place where bunnies live. I would be able to visit my parents a lot. I would get a big room just like my parents have. I could see how our puppy is doing. I would get two cats to keep me company. I would have a rocking chair in my room. I would have a great backyard where my cats could play. I would have seven bird houses and two bat houses. I would feed the deer. I would have a hummingbird feeder. I would leave nuts for the squirrels and I would have a lot of animals visiting my yard. I would love it. If I could go on vacation I would go to my cottages in Grand Bend and Bayfield."
Oh, my darling girl. I can't tell you how many times I mentioned the many places we've gone on vacation, all the places she could live, or even visit...and she only wants to live here and visit her aunts and grandparents if she vacations! I think it's so precious to have her so content with her little house and life...and I do sort of hate that I'm going to have to really work with her to make this writing piece actually fit the assignment better. All I really want is for her (and her sister and her brother) to remain such a big huge part of our daily lives - FOREVER! (just like she is writing here)- and I hate to have to make her think of other places, or other possibilities!
This year, I've been working on our book for about a week, and I am completely BLOWN AWAY by our year. Our monthly photo folders are LOADED with fun times - from my diagnosis time in February all the way to this moment. In the middle of all of these doctors' appointments, surgeries, chemo weeks - EVERYTHING - we've managed to squeeze in so many smiles and happy times. I guess I knew I was making a bigger effort to find the fun in everyday life, but to have such tangible evidence is staggering. This year's book is going to blow last year's book, and all those calendars from the years before that, out of the water!
We've been to Disney World, to the Great Wolf Lodge, to Niagara Falls, to Evanston twice...not huge trips but still, so much fun considering what we were up against! We have loads of family party pictures, celebrating birthdays, pictures of us on everyday nature walks...we got a puppy, I have pictures at field day, swimming all summer, the cottages. I know it sounds like a normal year with nothing really supersonic, but to me, having lived through what could have been a nightmare and looking back and seeing only sunshine is amazing. (And I know, Amy, that word is overused...but aren't you AMAZED? And you should be, because all the time I spent with you and my nephew this year made it so sunshiney!)
I can barely believe it...it's almost a magical turn of events. I should be ready for my final surgery around the middle of January, which is also when I will be done getting my Zometa infusions monthly (I'll go to every 3 months after the January infusion). The timing is such that I can get my port removed at the same time as I undergo that final surgery, which is great.
In another amazing turn of events, I'm writing for Trusera as a paid-stipend blogger. We definitely like getting a little stipend around here, but it does keep all of cancer-world still a little too close to me for comfort. The amazing part of all of this is not necessarily the paid-stipend part (though I like that, too!), but that my 3 month contract ends THE DAY BEFORE my one-year anniversary of diagnosis! It means within one year, I will have undergone chemotherapy and all of these surgeries (and be totally recovered, if the last one is in mid-January), my port will be gone, I'll be on Zometa every 3 months, I'll be done writing about my experience, and even Sybil will be done with her 6 rounds of chemo.
That's A LOT of stuff to have taken place in one year, but isn't it amazing that it is compactly-fitting into those 365 days? I (of course) know I will be dealing with this cancer, and my BRCA+ status, for my whole life, but I like the possibility of it being one year of utter craziness. I wouldn't even want all of my cancer stuff to go away, if I could have that happen - I have learned too much, grown, made such great friends - but it will be nice to have this chunk of it behind me!
Anyway, I am planning for my "New Year"...and thinking that I'm always going to make February 18th my own little "New Year's Day". It's my way of turning around an anniversary that could have meant a lot of sadness and bad feelings, into a day of celebration. I am proud of the person I am becoming through cancer, and thankful for my friends and family who have supported me through this. Plus, in a realistic way, each time I make it past that cancer anniversary without incident is a very big reason to celebrate...triple negative breast cancer has a higher rate of recurrence for the first 3 years. After 5 years, though, the rate of recurrence decreases dramatically...and after 8 years, some research shows that it goes to near-zero.
I don't really feel like waiting around and worrying about my cancer coming back for the next 2 and 1/4 years - 7 1/4 years, so I'm making Pam's New Year's Day count. THIS year, I begged Bill to throw his caution to the wind (now that we are almost done, we are really starting to rein in the finances which we were NOT doing 9 months ago) and to plan a fun vacation for us. He must really think I am going to live forever, because I had to really whine about it in a way I would NOT have had to whine about it 9 months ago. So, a few days after Pam's New Year we are heading off to Roatan, an island in Honduras, to swim with dolphins, snorkel, scuba dive, and be warm. (Don't you want to come celebrate Pam's New Year's Day with us? My husband can tell you how to do it for a reasonable price...)
Nathan: "Katie, you're such a djerk!"
Emma: "Do I ever tell YOU to go to YOUR room when you are yelling too much?" (Directed to me, after I sent her to her room for yelling too much!)
Katie: (silently running around wreaking havoc, giggling uncontrollably as she bothers people, and then crying when they react in a manner that is unfavorable to her)
But I am happy, nonetheless! The house is clean, the plastic surgeon couldn't pull out any additional fluid from around my surgery site, my puppy is not as big an idiot as I was expecting, and the kids are pretty great, even if they are demonic at the moment. My husband is truly number one - so helpful, so giving, so cute when he doles out my 20 vitamins a day.
Plus, why not be happy? In the back of my mind, I know I have the BRCA1 genetic defect, I know I had breast cancer, I know what *could* lie ahead. So I'm just so happy to be healthy and feeling great for the moment, and I'm going to hope this goes on endlessly!
Emma is hoping that for me, too...at recess in the art room the other day, she and her friends made me a giant poster based on one of my favorite lines from a song by The Killers. She wrote down the quote: "And if I pave my streets with good times, will the mountains keep on giving?" (yes, same quote from the masthead of this blog...) Underneath that line she wrote, "For my Mom they will!"
My darling Nathan and I rushed into the car, after changing a diaper which only seems to need changing when you have 1 minute to get out the door! I got to the doctor's office at 2pm (he is usually not in the office on Fridays, I was so lucky, but I needed to be able to get there by 2pm). I did look a little fluid-filled, and he drained 60cc's of fluid from around my expander. I didn't feel the needle go through the skin, but I could feel it (YIKES!) near the muscle. I'm not a fainter, normally, but the world sure started swirling just then!
Just picture the scarring of the 3 year old - "Honey, we need to go to the doctor right now, we can take this nap later." "Do you really have a poopy? Really? Lie down right here on this floor and I will change it!" "Get in your seat, get in your seat, we have to go, we have to go!" Not to mention his mother dropping her shirt and revealing her crazy chest to strangers (he's seen it, it's impossible to keep him out of the bathroom when he's lonely and everyone else is gone, but he's never seen me bare it to people he doesn't know! Hopefully he won't think this is what Mommy always does!), and then seeing the doctor grab a gigantic syringe and needle and pull bloody fluid out of his mom's chest! Then she almost faints so they have to flip the chair down, put cool cloths on her head, etc. And I didn't even think to bring activities for him to do, so I just pulled out my iPhone and looked up Thomas the Tank Engine videos on YouTube to keep him busy!
I love my plastic surgeon, and I love his nurse (or should I say my nurse). They are such great people that even when I was worried about this surgery, the only thing I took consolation from was the fact that I would be seeing them so much more often. (What am I going to do when I am all done with this reconstruction? I'll have to think of other work to have done...not really, I've never been happier with all of my natural lumps, but maybe I can worm my way into their lives another way.) They convinced me it was a good idea to come in and get drained...that I wasn't crazy or neurotic, that they are there for such things.
I have decided I am going to spend the whole weekend doing nothing (horrible, horrible, painful thing that is for me), and hoping/praying for no more fluid collection that could lead to an infection. And that is my story for the night!
No, this isn't our puppy...Bill is cuddling Hope right now and whispering sweet nothings in her ear. But they do have 3 of her sisters and 3 of her brothers available.
Ha ha. (It was Bill's idea to post this. I know we are the only crazy people around!)
I just got my drain out today...how happy I am about that! Now I am just willingly taking oral antibiotics, wearing a medical bra which is sucking the life out of me with its tightness, and praying for no infection this time around in the reconstruction process. For those of you who may not remember, I had an infection about 2 weeks after my mastectomy/immediate reconstruction which required that I remove my tissue expander and start over again after chemo was completed (now)!
I wouldn't say it is time to throw a party, but I sort of am throwing a little one in my head anyway. Yes, I should wait until a couple of weeks have passed with no infection. Yes, my mother-in-law goes for her second round of chemo next week, so we are still very much living with the cyclical nature of cancer treatments in the Lucken household. Yes, I am still going to have just enough time to put my house together until cancer treatments of some sort force me to fall behind again (mother-in-law's, not mine). Yes, I can't really lift anything, or exercise vigorously, for at least another 3 weeks. Yes, I still have more MD appointments in the upcoming month than I would have previously had in 3 full years. But...the DRAIN IS GONE! Do you have any idea how good that feels? WHOOOO HOOOO!
What's a 3-day cancer? I sure wish my cancer had been of that variety.
I could talk all day and all night about my breast cancer story, but if I was the person reading it, I would be scanning to get the information first, and then going back to read the story! Who needs suspense when you are already dealing with cancer?
So, to start things out, here are my facts!
- Name: Pam
- Husband: (quite a guy) Bill
- Children: 3…2 daughters, 9 and 6.5 years old, and a son, 3 years old.
- Age: 35
- Breast Cancer diagnosis: 2/18/08, Stage I, triple negative, grade 3 tumor, 1.7cm, right breast, 3 lymph nodes removed were negative for cancer
- Age at Diagnosis: 34
- Surgical choices: Bilateral Mastectomy with Immediate Reconstruction – 3/17/08 (with a couple of surgeries thrown in, as I had an infection on my right side…Tissue Expander removed before chemo 4/6/08, just recently have had surgery to reinsert that expander 11/7/08, plan for implants) Lap BSO – Laparoscopic Bilateral Salpingo-Oophorectomy (removal of ovaries and fallopian tubes) – 10/13/08
- BRCA 1: Positive for Deleterious Mutation (I just like saying the whole thing, don’t ask me why)
- Chemotherapy: 6 rounds of TAC (Taxotere, Adriamycin, Cytoxan), every 21 days – 1st round: 4/18/08, last round: 7/31/08
See, isn’t it nice to get that information up front? :)
I found a lump in my breast accidentally. At 34 years old, I hadn't had a mammogram yet, and as a mother of 3 young children, I wasn't so great about doing self-exams.
So in early January, I was putting away our holiday decorations (rushed, as usual) in the basement, in the dark (why?), and I tripped over a roll of extra carpet and went crashing into a barrel I used to store rolls of wrapping paper. As I lie there in the dark, with the wind knocked out of me, I felt sorry for myself. It was a bad fall! At that time, I didn't know how lucky I was.
Not quite a month later, my family and I were on a trip to Disney World when I did a self-exam...both to do an exam, and to check to see how my bruising/pain from the fall were healing. When I found the lump, I had a bad feeling, and even worse, my husband had a bad feeling, too! (He's the more relaxed partner in our marriage.)
I returned from our trip on Sunday, called my OB/GYN on Monday, saw him Tuesday, and was scheduled for a mammogram (which turned into a breast ultrasound and a core needle biopsy) on Friday. Monday night, my doctor called me. He sounded sadder and even more perplexed than I did: breast cancer in his 34 year old patient.
It felt illogical that I would have breast cancer or the BRCA1+ mutation - of all the risk factors I have ever read, I had none of them, other than having a grandmother who passed away from breast cancer in her 60s. It didn't matter if it was illogical, though - I prefer to prepare myself for the worst, and by that Sunday night, I had already gone through the scenarios in my head (it doesn't take long!).
I was ready for action, immediately! I was incredibly lucky, also. At 34, I had 3 children and had breastfed them all. I was proud of my extra-utilitarian (though small and finally, saggy) breasts for feeding my babies, but I was also ready to hand them over to the surgeon. I was given surgical choices (this was before my genetic results came back), and unequivocably chose bilateral mastectomy. If this could happen to me at 34, what was going to happen at 44, 54, 64, 74? (I was 12 when my 38 year old mother passed away from a massive heart attack...a big goal in my life has been to become an old woman and I would give up anything to get there.)
My surgeon knew I was BRCA1+ on the day of my bilateral mastectomy, though I wouldn't find out until I met with the genetic counselor about 2 weeks later. Somehow I had "felt" that news coming, too...another "illogical" prescience. I had almost no breast cancer in my family - other than my paternal grandmother. It was a hidden defect in our case - she had 6 boys, and though she was one of many children, they had few children and those children were also almost exclusively male! I had a feeling, though...two of her sisters had died of "one of the cancers of the reproductive system - cervical or ovarian?" when they were younger (though they were older than I am. When I got my BRCA1+ diagnosis, I could answer that question quite definitively - ovarian cancer.)
Although I stumbled - literally and figuratively - into the world of breast cancer and BRCA genetic mutations - I have to say, I feel pretty lucky. I feel lucky for the fall that helped me to find my cancer, lucky for the kind doctors and medical staff along the way, lucky for friends, family and acquaintances who have made these 9 months pretty special for our family. Who would have thought a person could say that about 9 months filled with surgeries, chemotherapy, and recoveries?
Truthfully, there is probably not a good time to get a puppy, but there is probably not a bad time, either. It's up to the family to weigh the risks and benefits of adding a new family member, and know there WILL be both risks and benefits. For us, could we have waited until after my surgery? Yes. Do we already have a lot of pets and other things going on? Yes. BUT...Do we have a lot of pets and other things going on? Yes, and those pets and other things going on makes it almost easy to have a puppy, too. We are in a period of relative chaos, and what is one more piece of chaos added to chaos? Just chaos.
We knew that Hope was not going to be the puppy that changed our world, as we've already supplied ourselves with those pets - our first pet, adding a second pet, our first dog, the pet who defined me as a deranged person (the rabbit whose cage was in our dining room - yikes, but it was our first house, a definite fixer-upper), the mistake (guinea pigs for kids...they are great, though, just not as fun once you get up there in numbers. They turned me into a mini-zookeeper). Our family likes our puppy quite a bit, but it would be a little much to say we are all over the moon with her very presence.
Emma summed it up pretty well this morning, when I asked her if we now have too many pets. She looked at me with a strange look, and said, "No, Mom! They are my friends who keep me company and sleep on my bed at night!" She feels the same way about the pets that I do - they keep watch over her, snuggle next to her when she's sleeping, or come to her when she is upset. It will take a while for Hope to be able to provide us with the companionship and care that we get from our elderly pets, but that is why we got her. Hope is an investment in our future...and isn't that true of all hope?
Anyway, we are happy with our puppy. I still have a drain from my surgery but it is not setting me back at all, and it's only Monday (surgery was Friday). Hope has learned to come when she's called, she sits on command, Nathan knows how to put her in a head-lock when she is biting him (the problem with a 11 week old puppy is all the teething). She's crate-trained, Dagny helps by taking her outside to relieve herself (Hope will always follow Dagny outside, and Dagny obliges me by going outside way more than is necessary for her). Since we have a puppy pen and a crate, my elderly pets get plenty of quiet time...and the extra trips to the pet store have supplied them with more new treats and toys than they have had in a long time. Dagny is getting more walks, baths, and all of the old pets are getting more affection (if that is possible) because THEY aren't crazy or biting us. It took only 6 days before all the pets seemed to be happy again and were sleeping with me at night.
Hope, for her part, has a household with plenty of companionship, room to run, and people to train her. She's got a few years before the spotlight will be all on her...when we are going to need her to be the pet we hug and snuggle with when we have to go through the inevitable loss of our more elderly family members. In the meantime, she's just a cute, cute puppy - complete with puppy kisses and wiggles, and all the joy and excitement that new life brings. She's a pretty constant reminder of how we chose, in the middle of a fair amount of chaos, to add HOPE to our lives! (Isn't it a great name?)
I am enjoying myself at Spa Beaumont. It's not terribly pretty here, but I've got pain meds on board, people to help me, and no responsibility - the recipe for a pretty great night! Plus, my sister stopped over for a while and we had an uninterrupted conversation (a precious commodity these days). What more could a girl want?
My nurse has been kind, the medical assistant is even nicer (not to mention terribly handsome)! I have entertainment - people walking down the halls (I flash them my winning smile and judge their reactions), and my next-door neighbor had some sort of plastic surgery on her face. All of her friends are commenting on light topics, like
how much weight they lost, or admiring her Gucci bag. It takes all kinds to make this world an interesting, lively place!
Oh, yes...and the surgery went well. There was minimal scar tissue, my fabulous MD was able to make a smaller incision, and it only took an hour (was booked for 1.5 hours). I'm spending the night for the IV antibiotics, and then I go home tomorrow a.m.
Sent from my iPhone
I still get cranky about broken vacuums. I know I'm hard on them, what with the 7 pets, 3 children, an outside-time obsession and my interest in keeping my feet dirt-and fur-free indoors. Alas, I think our 3 vacuums have had enough, and I didn't use my luck and prayers to ask for them to work longer. So, broken vacuums and crankiness...but then I decided to focus on the ways I have been lucky instead.
Today's list: How Lucky Pam has Been (even when she didn't know it)
- I was lucky to meet my husband...and lucky that he didn't listen to me all those years when I told him to find someone better. Really, who would stick by a person for 7 years, listening to that (before something like marriage or a formal engagement was forcing him to)? He has proven his devotion to me and to my family, time and time again, even when I am bald, deformed, calling him a hundred times a day, or asking him to change another poopy diaper.
- I am lucky I followed the urge to have my children when I did. I didn't think so at the time, as I didn't know anyone my age with babies and felt like a bit of a pariah on that front. I even surprised myself and Bill with the urge - a sort of the heart-leading- the- head scenario ensued each time as Overachiever Pam who so wanted a great career gave way so that this totally New Pam could take over.
- I'm lucky I had that fall in the basement and found my breast cancer when checking myself to see if I had healed.
- I'm lucky we moved into this house when we did. It has the perfect amount of space and a separate living quarters which has allowed my sister to bring her baby and help keep my family running every time I am recuperating from something.
- I'm MORE lucky that I was given such loving sisters. I knew they were giving, caring people, but I did not anticipate or expect A to be driving back to MI with her little baby in tow each time I had something hard to go through! And I did not anticipate J flying her family here twice and spending both her and T's PTO visiting her dilapidated sister.
- I'm lucky we decided to stay in Michigan and raise our family here, against my desire to move to other places and see how other people live. We live so close to so many family members who have been our support through this year - my mother-in-law, my stepmother and father, my aunts and uncles, Bill's family.
- I'm lucky to have the friends that I have...crazy lucky, as I am not so good at staying in touch. Plus I did start this family a little earlier than some, which kept me busy in a different way. I'm still amazed that I have any friends, I feel unworthy..and then to have such kind friends humbles me even more.
- I'm lucky for my pets, and for Bill's tolerance of them. They are such fun diversions, even if they are a lot of work. And now I have to go back to the task of getting them all ready, cleaned up, and prepared for me to be out of commission for a few weeks!
He said everything we've been told all along (actually, he said it would be of about the same benefit to me as if Bill had my radiation for me, which we thought was very funny). Because I was a Stage I breast cancer with no lymph node involvement, the only real indication would have been the very small margin near the chest wall (you want good, big, clear margins). Since the surgeon removed the fascia and it hadn't been invaded by the tumor, my risk there is not a big risk.
I have the feeling my breast surgeon wanted me to see a radiation oncologist because she has a protocol she follows now when women are diagnosed with breast cancer (which maybe she wasn't following as closely almost 9 months ago when I was diagnosed)...telling people to see her, a medical oncologist, and a radiation oncologist. Both she and the medical oncologist were almost positive I would not require radiation (and they are all at the same tumor board meetings, so I am sure their guesses had a lot of experience behind them) but she wanted to be sure.
Anyway, now I have the name of a very wonderful radiation oncologist, just in case someone needs that someday! Also, I heard from him something I hadn't heard otherwise (just another something that probably slipped through the cracks somewhere)...the best way for me to monitor recurrence in the very small amount of breast tissue that could be left is to do self exams every month. I should also have a professional do an exam every 3 months.
Monthly self exams can be every girl's friend - whether or not she's had a bilateral mastectomy!
So, all systems are go for my 4th surgery of the year...scheduled for this Friday.
Writing helps, but I can barely write as I'm frustrated with my chemo brain. I feel a little bit like I have ADD - I want to keep plugging along at one thing but then something distracts me. With my writing, I can't get to the nice tidy place where all my thoughts are complete and concise. It doesn't help that the computer is in the same room with 4 kids, the UM game on TV, I'm thinking about where the puppy and pets are, and my husband keeps checking on me - "Are you ok? Are you ok?" I had a pretty good-sized breakdown two nights ago (lots of crying - probably more than I've done this whole 9 months together), so I have a feeling he's not going to leave me alone for a while. I'm also not getting any quiet time until I have this surgery, so I either have to perform in the midst of the chaos, or look forward to the surgery!
It's pretty crazy if you look forward to getting to the hospital, to anesthesia, and even to the pain that comes afterwards because it at least gives your poor addled brain - and your motherhood - a rest. With the craziness of this year, though, that's about the best rest I'm going to get! Anyway, I'm looking more on the bright side today. Here's a few quick positive thoughts, to keep it going, and get them off my mind:
- I can't really help that I have the BRCA1 mutation, or that I had breast cancer, or that I have elevated risks of all sorts of cancers for the rest of my life. The only thing I can change is how I use my time while I have it, and how I embrace challenges. If I have a shorter time, or more health issues, I want to at least be able to say I have taken as much happiness as I could have. Focusing on how much things suck doesn't accomplish that.
- It's normal to cry, to be mad...and I'm glad I did write about it so that I'll remember those emotions someday. I will probably meet someone else going through these challenges down the road, and with my propensity to move on and never look back, if I don't have a record of having had some issues with this challenge I might not be the best supporter for the next woman facing bc, or brca mutations, etc.
- Of course I should miss how easy things were before - getting dressed without fiddling with breast forms, having hair, not worrying about surgeries, pain, cancers coming back. I was jealous of all the moms rushing around for Halloween who don't have these worries, jealous of the me I was only last year. That's ok, I'm not going to beat myself up for it. I also remember that I didn't find my life particularly easy last year, either...I didn't know how lucky I was. I think it is human nature to rise to the occasion, though, and I have risen this year! As a result, I don't normally find things harder than I thought they were before all of this.