Thursday, July 31, 2014
Let me start by saying that I live in Texas. It is the last day of July, which is smack dab in the middle of summer...and I had my heated seat on in my car. It was barely 70 degrees, cloudy and misty on my drive to Dallas. I needed the air conditioning to keep the muggy away, but then I'd get chilly. Hence the seat warmer.
I had a therapy appointment with my lymphedema specialist this morning. These are always interesting. Not because of the therapy, but because of my therapist. She does a ton of lymphatic massage and stretching, which hurts in a good way. She also does a lot of talking. Most of the talking is her complaining about her husband who spends too much money, her stepdaughter who doesn't like her and her son who is twenty-five years old and unemployed. She's very nice, and funny, and I enjoy our chats, but the more I see her, the more I feel like I'm a therapist for my therapist.
I had three hours in between my Fort Worth appointment and my Dallas appointment. I spent that time navigating the traffic-inducing alwaysunderconstruction highways of the metroplex to go visit Allyson. Her family wasn't kidding when they told me the cemetery is "out in the country". They also weren't kidding when they said it was beautiful. Allyson's resting place is so peaceful and pretty...it couldn't have been more "her" if it had been designed specifically for her. I know Hubby was worried about me going there today alone. He knew this wasn't going to be an easy thing for me to do. There were things I needed to say to her, though...the goodbye we never had. Someone had placed wind chimes in a tree near where she is buried. If you can love something about a cemetery, I loved that. I stood there trying to make peace with the fact that my sweet friend is no longer in my life but is now in God's hands, and the tinkling of those chimes soothed me a little bit. The blaring of the train engine from the railroad tracks next to the cemetery sort of ruined the moment, until it hit me that Allyson might have been giving me a little nudge. I could almost hear her saying, "Why are you leaning against the tree crying and being sad? Good Lord!"
I miss her laugh. I miss her sweet heart. I miss her silly imagination. I will miss talking to her, I will miss comparing notes on mothering moody 12 year old boys, I will miss reading her blog. I will miss her guidance and support in my fight against my own Monster. What I won't miss is her pain, and her sadness. She is whole and happy, and while I know her first priority is to watch over her boys, I claim her as my guardian angel.
I brought a little garden solar light for her. I hope it stays. I promised her I would bring one every time I visit (in case it's gone) so she's not in the dark. I want that little light to shine as a symbol of the goodness and light that was Allyson.
I finished the day at my appointment for yet another scan in Dallas. The CT technologist was extremely nice...and also extremely chatty. I learned that her ex-husband in Phoenix had an affair with a fellow resident and she caught them red-handed - and naked - in the hospital. (WHY do people tell me these things???) I also learned that she scanned a lot of people in Phoenix who had the same reconstruction surgery I'll be having, and that she was "flashed" by the last patient she saw because the lady was so proud of her reconstructed breasts. The IV hurt like hell and the contrast gave me an instant headache, but the scan only lasted ten minutes and I was out of there in time to beat the 5pm traffic. Before I left, as she walked me out to the elevators, she hugged me tight and said "Don't worry, you're doctor is a good one."
It's purely dumb luck that I ended up at UT Southwestern for my care, but I am so grateful. Everything is so streamlined and efficient (except for doctor visits) and everyone is so nurturing and supportive. These people see hundreds of patients, and yet I leave there feeling like they care. They hug me and hold my hand and encourage me every step of the way. Good thing, because I'm having to take a lot of steps!!
Wednesday, July 30, 2014
When you have surgery for breast cancer, you don't just carry scars from losing your breasts. There is trauma to the entire chest and underarm area. Under and behind my arm? Still completely numb, and probably always will be. Muscles are affected and the lymphatic system can be damaged. Thankfully I haven't (knock on wood) shown any signs of lymphedema swelling in my arm, but I feel like my entire left side has a whole host of spiderweb-feeling THINGS that make everything feel tight. I don't know if it's the 'dead' lymph cords from having so many lymph nodes removed or if it's scar tissue from surgery....All I know is it feels weird!
Tuesday, July 29, 2014
Somehow all of the social genes from our mother went to my big brother, and I got the introverted and quiet genes from our dad. Most of the time I don't mind. I'm shy. I prefer to watch rather than be watched. I'm a wallflower and hate to be the center of attention. In my quiet little life, all of that works quite nicely.
Most of the time.
Being a cancer patient presents a conundrum... you get so sick of being focused on cancer, and having people focused on helping you because of cancer, that it seems like you're never alone. Between all of the poking and prodding involved with exams, surgeries and treatment and the well-meaning (and much appreciated, believe me) people showering you with love, prayers and assistance, you are constantly surrounded and can sometimes feel on display. Your cancer becomes everyone's business. On the other hand, while it's not private, cancer is a very lonely disease. Even though cancer is everywhere, unless someone has walked in these shoes, they can't possibly understand what you're going through or how you're feeling. That alone separates you from the pack.
My BFF has walked in my exact shoes (well, actually, she went first, so I'm walking in her shoes), so she more than anyone knows how I'm feeling on any given day. She's known me for almost three decades and has seen me through many of life's ups and downs. Unfortunately she lives thousands of miles away. I've recently met two women from a Facebook group (my Bellas) who have been there, done that and have the scars to prove it. They are kick-ass women with hearts of gold. They are also my social opposites. If we hadn't met and formed a friendship online through our kindred breast cancer spirits, I doubt we'd have anything in common. I was fortunate to meet another of my online friends who seems to share a lot of my personality traits, or at least those regarding the way I feel and how I react to this whole stupid breast cancer thing. We were able to talk fears, insecurities, vulnerabilities, etc. While any of these women are just a click or phone call away, they are not here to share in my every day life.
Two of my good friends recently moved (thank you, U.S. military), taking away not only two of my kids' best friends, but also ladies that I really counted on. They each offered support in their own way, but the theme of our friendships was decidedly not cancer. They were women I could count on for a meal and a laugh, or a ride from school for my child, or just someone to hang out with. They walked all night with me at Relay for Life because my friendship means something to them. I'm still trying to come to terms with the loss of my friend Allyson. While geography kept us from sharing everyday life, I always knew she was there...for twelve years she was there for me...to call for advice, to pop in for a visit, to look to for guidance on this rocky road of living with cancer. It's going to be a long time before I travel to see one of my doctors in Dallas and I don't automatically think, "Maybe I can see Allyson this visit".
Why the meloncholy today, you ask? It's hard to make friends. It's even harder when you're not a social butterfly and feel awkward making conversation with new people. When I picked J and his friend up from football camp today, my sense of "alone-ness" really hit me hard. I got there early so I sat in my car to wait, and I observed all of these people sitting together, chatting, etc. These are parents of J's classmates, people I've been acquainted with for years, and I can't help but wonder why I don't fit in. I know most of them, and I'm friendly with a lot of them. But not one of them is someone who would call me up to say "Hey, do you want to have lunch?" Maybe it's because I don't put myself out there. Maybe my shyness comes across as standoffish. Maybe I'm not as nice and fun and interesting as I think I am.
It's more likely to be something as simple as the fact that everyone else has a busy life, too. It's just sucky, and lonely, that my life is busy because of cancer.
I have many good, good people in my life - you know who you are, and thank you. I've always been of the mindset "quality, not quantity". I am perfectly happy with my little circle of friends who have my back and who I trust to give me true friendship in return. I've never been one to like being part of a big group, but it saddens me that my little group just keeps getting smaller and smaller. If you're in my posse, get ready for me to tighten the reins, because I am not losing another friend (and yes, I'm shaking my fist and stomping my foot)!
Monday, July 28, 2014
Sunday, July 27, 2014
Saturday, July 26, 2014
Friday, July 25, 2014
Thursday, July 24, 2014
I know there are cancer survivors who live for years, even decades, without recurrence. One of J's teachers told me he knows the longest living cancer survivor in our county, and he said he hoped one day that would be me. Heck yeah! But for every happy ending cancer story, there is an unhappy one. My BFF had cervical cancer, and after celebrating her 5 year cancer-free anniversary, she was hit with breast cancer. My dear friend Allyson's Monster came back several times after surgery and/or treatment, and the last 7+ years of her life were spent fighting cancer. My mother-in-law survived breast cancer and lived for ten years, only to have it come back everywhere.
Unfortunately, it's not only cancer. One of my KCA ladies lost a sweet friend yesterday in a freak accident. Another lost her adult son a month ago. A mom I know from J's November 2001 Babycenter group posted yesterday that her friend's husband passed away, leaving behind his wife and I think six kids. You just never know. Your world can change in an instant. I've said it before, and it's sounds like a cliche, but make the most of every day. Life is too short to be miserable or take anything for granted.
Every day that I wake up to give my kids a hug and tell Hubby I love him is a gift.
Wednesday, July 23, 2014
- Our wait time to see him is still ridiculous. One hour and forty-five minutes in the waiting room, then ten minutes in the exam room. All for a ten minute check up.
- My platelets are low. (Does anyone know what that means? I don't.)
- I will not have any "routine" scans unless I become symptomatic or my labs indicate something concerning. If I really, really need reassurance, then he wouldn't be opposed to ordering a CT scan, but he sees no need right now.
Tuesday, July 22, 2014
Monday, July 21, 2014
Silence is what fills the many, many hours I spend in waiting rooms and doctor's offices during the dozens of appointments I must go to. Yesterday I had an ultrasound to check out my ovaries and other female parts. As I lay there on the little table while the radiology tech did her thing, I stared at the ceiling and listened to the silence. I wished for some kind words.... or some soft music.... and I really wished I had asked for my hubby to come in with me. He was in the waiting room (of course, because he refuses to have me face any part of this journey on my own), but I really wanted him WITH ME. Even though it was a minor test, and I wasn't having any problems with that part of my anatomy, I felt really lonely in that room undergoing yet another procedure that I wouldn't have to do if I didn't have cancer.
I really could just repeat that same paragraph today. Even though the waiting room wasn't silent, and the ultrasound tech was very chatty, I still felt very, very lonely during my ultrasound. After everything I've been through, I don't have a clue why this one procedure bothers me so much. Given the fact that numerous doctors, nurses and techs have seen my naked body over the last year, it's a little weird that laying under a sheet and having this scan makes me really uncomfortable.
I've given birth twice, and we all know modesty goes out the window with that, so I don't think that's it. Between those two pregnancies and the two that ended in miscarriage, I'd need both hands to count how many ultrasounds I've had in the last fifteen years. Instead of laying there watching the screen and waiting to see the little flashing heartbeat of a baby, I have to lay there, staring at the ceiling tiles while wondering what they are seeing. Does everything look normal? Is she taking so long because she found something? Or is she just very thorough? It felt very thorough. (In case you don't know, part of this kind of ultrasound is....er....internal. TMI - I know. Sorry.)
Since I'm having surgery in a few weeks to remove those female parts that were scanned today, I doubt I will have to undergo this particular procedure again. But if I do, I am going to try to remember to ask if Hubby can come in with me. I'm sure it's on his top ten list of things he doesn't want to do, but he'd be present if I asked. That's my silver lining for today - he's my rock, and he'd do anything for me.
Sunday, July 20, 2014
Having cancer makes a person selfish. A cancer patient is almost 100% focused on themselves, and they need to be. Getting through treatment is overwhelming and all-encompassing. We don't always take the time to express what we need or how you can help. We have to concentrate on getting through each day, because each day is a struggle - even the good days. And cancer changes you. Our battle doesn't end once our treatment is over. We carry the scars (emotional and physical) forever. It takes time, sometimes a long time, to recover from all we have been through. Our lives have changed and it's a learning process, figuring out how to live as a cancer survivor and all that that entails. There are side effects from treatment that linger (and may never go away). Feeling tired is a new normal. There is a new appreciation for each day, each moment... but there is also an underlying fear, because our innocence has been stripped away. Cancer happened once, it can happen again.
I wanted to share something I read today, because not everyone is as fortunate as I am. People get caught up in their own lives, they are uncomfortable dealing with cancer, they don't always know how to help. The woman who wrote this puts into words a lot of what we wish everyone knew.
What your friends with cancer want you to know (but are afraid to say)
People with cancer are supposed to be heroic.
We fight a disease that terrifies everyone.
We are strong because we endure treatments that can feel worse than the actual malignancies.
We are brave because our lab tests come back with news we don’t want to hear.
The reality of life with cancer is very different from the image we try to portray.
Our fight is simply a willingness to go through treatment because, frankly, the alternative sucks. Strength? We endure pain and sickness for the chance to feel normal down the road. Brave? We build up an emotional tolerance and acceptance of things we can’t change. Faith kicks in to take care of the rest.
The truth is that if someone you love has cancer, they probably won’t be completely open about what they’re going through because they’re trying so hard to be strong.
However, if they could be truly honest and vulnerable, they would tell you:
1. Don’t wait on me to call you if I need anything. Please call me every once in a while and set up a date and time to come over. I know you told me to call if I ever needed anything, but it’s weird asking others to spend time with me or help me with stuff I used to be able to do on my own. It makes me feel weak and needy, and I’m also afraid you’ll say “no.”
2. Let me experience real emotions. Even though cancer and its treatments can sometimes influence my outlook, I still have normal moods and feelings in response to life events. If I’m angry or upset, accept that something made me mad and don’t write it off as the disease. I need to experience and express real emotions and not have them minimized or brushed off.
3. Ask me “what’s up” rather than “how do you feel.” Let’s talk about life and what’s been happening rather than focusing on my illness.
4. Forgive me. There will be times when the illness and its treatment make me “not myself.” I may be forgetful, abrupt or hurtful. None of this is deliberate. Please don’t take it personally, and please forgive me.
5. Just listen. I’m doing my very best to be brave and strong, but I have moments when I need to fall apart. Just listen and don’t offer solutions. A good cry releases a lot of stress and pressure for me.
6. Take pictures of us. I may fuss about a photo, but a snapshot of us can help get me through tough times. A photo is a reminder that someone thinks I’m important and worth remembering. Don’t let me say “I don’t want you to remember me like this” when treatment leaves me bald or scarred. This is me, who I am RIGHT NOW. Embrace the now with me.
7. I need a little time alone. A few points ago I was talking about how much I need to spend time with you, and now I’m telling you to go away. I love you, but sometimes I need a little solitude. It gives me the chance to take off the brave face I’ve been wearing too long, and the silence can be soothing.
8. My family needs friends. Parenting is hard enough when your body is healthy; it becomes even more challenging when you’re managing a cancer diagnosis with the day-to-day needs of your family. My children, who aren’t mature enough to understand what I’m going through, still need to go to school, do homework, play sports, and hang out with friends. Car-pooling and play dates are sanity-savers for me. Take my kids. Please.
My spouse could also benefit from a little time with friends. Grab lunch or play a round of golf together. I take comfort in knowing you care about the people I love.
9. I want you to reduce your cancer risk. I don’t want you to go through this. While some cancers strike out of the blue, many can be prevented with just a few lifestyle changes – stop smoking, lose extra weight, protect your skin from sun damage, and watch what you eat. Please go see a doctor for regular check-ups and demand follow-up whenever pain, bleeding or unusual lumps show up. Many people can live long and fulfilling lives if this disease is discovered in its early stages. I want you to have a long and fulfilling life.
10. Take nothing for granted. Enjoy the life you have right now. Take time to jump in puddles, hug the kids, and feel the wind on your face. Marvel at this amazing world God created, and thank Him for bringing us together.
While we may not be thankful for my cancer, we need to be grateful for the physicians and treatments that give me the chance to fight this thing. And if there ever comes a time when the treatments no longer work, please know that I will always be grateful for having lived my life with you in it. I hope you feel the same about me.
About the author
Kim Keller is a Dallas-based mom, wife, teacher and journalist. She is currently receiving treatment for thyroid cancer.
Saturday, July 19, 2014
Friday, July 18, 2014
Um... no. I'm not exactly the most outgoing, public person, but I've been eating, sleeping and breathing cancer for almost a year, so it's a little shocking to me when I see someone I know and *they* don't know. It seems like everyone in my world would know. The town I grew up in is Smalltown USA at its best, where everyone knows everyone. And the town I live in now? It's like three degrees of separation and the gossip mill tends to run rampant.
The person who asked about my hair on vacation was a friend from school. I've known her since I was about eight, and we were really good friends all through school. While I only see her once a year when I go back home in the summer, I didn't mind sharing my story with her. I was a little surprised that she didn't know, considering she lives in the same town as my mother (and all the people my mother knows know about me), but we don't talk or email and she's not on Facebook, so I guess it's understandable. She also is friends with my BFF so she was very sympathetic that I'm going through exactly what my BFF did.
The lady who commented on my hair last night is someone I know from my kids' school. She's nice, but at most an acquaintance, so I felt like a deer caught in the headlights when she mentioned my short hair. I told her no, it was growing back (assuming she knew I'd been through chemo). She gave me a blank stare and then I got it - she didn't know. Maybe I'm weird or arrogant to think that everyone that I know knows that I had cancer. But it's not like I have a neon sign floating over me that says, "SHE HAD BREAST CANCER". This poor woman who has only seen me here and there at school was just remarking about my much shorter hair - she's not anyone I would normally feel compelled to share my medical history with.
Now that my hair is long enough to pass for some sort of short haircut and not just chemo regrowth, I guess more and more people who see me might make that same comment. They don't realize the hellish year I've had. They look at me and see Michelle with short hair.... and they don't know! Part of me feels very uncomfortable throwing my cancer diagnosis out there. I may write about it on here, but this is just me talking to my keyboard with a few people reading the end result. Talking about it with everyone I encounter...not my idea of fun. The people who really matter know the ins and outs of my life these past twelve months and they're not surprised when they see me. However, both times I was faced with that comment, I gave the same response. And I'm glad.
First of all, I don't like the way I look and I want people to know I didn't choose this. My hair is too short, my boobs are fake and I'm about fifteen pounds heavier than I want to be... and cancer did that to me. Also, even though there have been many people in my life affected by this disease, including some very close to me, it's something that you truly never think will happen to you...until it does. I want people to be aware. I don't want to put the fear of God in them, but I want them to know that it happened to me, it can happen to them so they need to be aware.
Thursday, July 17, 2014
Tuesday, July 15, 2014
Monday, July 14, 2014
I don't really mind air travel, but sometimes flying is frustrating! We arrived in Atlanta early, only to sit on the tarmac because our gate was already occupied. Then we discovered our connecting flight to Dallas is delayed 90 minutes (and we were already arriving late - 11:15pm).
Driving to New York every year is a huge trip, but at least then we are on our own schedule!
Oh well...we turned lemons into lemonade. Instead of rushing because of a short layover, we had time to eat at Chick Fil A. As long as we make it to Dallas and I get to see my Hubby tonight, all's well that ends well.
Sunday, July 13, 2014
Since Allyson's funeral is in Dallas, we are flying there instead of Abilene and Hubby will pick us up. We will all spend the night at a hotel (that I mistakenly booked for tonight instead of tomorrow night... Grrrr) and then go celebrate the life of Allyson Hendrickson Tuesday afternoon.
Please keep everyone who loved her in your prayers, especially her family and three young boys. Consider making a donation to Ally's Wish to help other moms with terminal illness.
Enjoy every day... each one is a blessing.
Saturday, July 12, 2014
Friday, July 11, 2014
Being on the water was so relaxing. We saw gorgeous waterfront homes, a couple of big oil tanker barges and picturesque lighthouses. J even spotted several Amtrak trains running along the river.
Last year it was just the three of us, so I'm glad we invited my dad and M to join us.
We got there early but it's a perfect area to have to kill some time. Here I am with my mom and dad waiting to board the boat - walking along by the marina near all of the boats.
Thursday, July 10, 2014
- my mom
- my dad
- NY pizza
- Lox of Bagels
- July Fourth
- tall, green trees
- walking barefoot in the grass
- Jolly Cow ice cream
- no schedule to follow (most days)
- COLD water to brush my teeth
- having a neighborhood to walk in
- winding, hilly mountain roads that are fun to drive on (makes me miss my MR2!!)
- Krause's Candy
- being away from my hubby
- rain (I know that's almost sacrilegious for someone living in Texas to say, but I have been here nine days and it has rained seven of them!)
- slow drivers
- spotty cell phone service
- no sweet tea (thank God for Sonic and McDs!)
- being without my own car (and my own tunes)
- ONE country music station that is static-filled most of the time
- missing my BFF and her kids this year