Sunday, November 30, 2014
I love the chill in the air, I love snowy weather, I love Christmas music, decorations and Christmas lights. I love trying to find that one perfect gift for each person I love. I love my Christmas dishes, and even though I think it's a tradition going by the wayside, I love getting Christmas cards in the mail.
I'm a little down about Christmas right now, though. I keep seeing my friends' pictures on Facebook of their pretty trees and houses all decked out and I'm just so overwhelmed with the idea of getting ready for Christmas. I have no clue how I did it last year, having just finished chemo. I am almost four weeks post-op and I still have zero energy. I don't know if this is normal or not. I know I had major surgery and it will take a long time for my body to heal. But is it ok to still get so worn out so easily? I don't know. What I do know is that I have no decorations out, only a few Christmas presents bought and no cards written out.
Part of the problem is my schedule is all messed up. Normally I decorate my house the day after Thanksgiving, since I don't do any Black Friday shopping. This year that day was J's birthday and we went to Dallas, not getting home until late yesterday. While it was really a great family time, our road trip really wore me out and I didn't have the motivation to do any decorating today.
Tomorrow I have to go back to Dallas for an appointment with Dr T. If I'm not too worn out, maybe I can start getting my house all Christmas-y on Tuesday. I'd like to get our tree soon, too, but J is very sick with a fever, cough, and fatigue, so no telling when either one of us will be up for Christmas tree shopping.
I think tomorrow morning I will at least put my wreath on the door. As I keep saying.... baby steps.
Saturday, November 29, 2014
We headed out on a road trip to the Metroplex (for you non-Texans, that's Dallas-Fort Worth) yesterday:
Friday, November 28, 2014
Thursday, November 27, 2014
- My Hubby. He is hands down the best support system I could ever have asked for. I can't imagine walking through life with anyone else. It's his hand I want to hold, his arms I want around me, his heart I want beating next to mine.
- My son. J and K truly are the joys of my life. Tomorrow J will officially become a teenager. I'm not sure how that happened, because just yesterday it seems I was complaining about potty training woes and rocking him to sleep.
- My daughter. K constantly makes me smile. She is quirky and funny and loving and grouchy. She loves to dress up and wear sparkly jewelry, and yet she doesn't mind getting dirty on the softball field or on the back of a horse.
- My mom. Thanksgiving wasn't quite the same this year without her here. I know she's where she needs to be, and she has her own things to take care of, but I want her to know that she's missed more than ever. If she's not here, who is going to make me turkey soup?
- My dad. I received a call today from my dad wanting to wish me a Happy Thanksgiving and see how I'm doing. I continue to be astounded day after day with his progress. When I visited him two months ago, I showed him my shirt that said "I'm a fighter", and I told him that's what HE needed to be. He's taken those words to heart and has gotten so much stronger. He is almost always in a good mood, his memory is getting better, his body is getting stronger and every day he is one step closer to going home. That makes my heart happy.
- My brother. We don't often talk and are lucky to see each other once a year, but he's my big brother and I'm so glad we have the friendship that we do. He called earlier when I was busy having Thanksgiving dinner, and it warms my heart to listen to his message. If you've never gotten a voice mail from my brother, you are missing out. You know that beep that cuts you off after so long when you're leaving a message? I think that was invented for him.
- My softball family. The little girls who call themselves the Lady Diamonds have stolen my heart. Every time I hear "Hi Miss Michelle", it puts a smile on my face. Their families are like my family, and I thank God for the support they've given me since d-day.
- My friends. You know who you are. Whether we talk once a day, once a week or once every six months.... you are in my thoughts and you are in my heart, and my life is richer because you're in it.
- My fellow breast cancer warriors - the Bellas and my KCA sisters. You are all amazing, beautiful, special women full of courage, strength, love, support, knowledge, humor and hope, and knowing you gives me hope for my future, and I know I'll never have to walk any part of this road alone.
Tuesday, November 25, 2014
Tomorrow will be three weeks since my surgery. When I had my mastectomy, I had four drains, and two of them were in for three weeks. That sucked. This time I had six drains, but luckily four of them came out within a week. These last two show no signs of slowing down, though, and that really sucks. I feel like I'm going crazy.
It's hard to explain if you've never had these drains.... you're probably thinking "What's the big deal?" They don't hurt. They are helping rid my body of excess fluid. They should just be a minor annoyance. They are beyond being an "annoyance". They are bulky and messy and make it a huge hassle just to take a shower or go to the bathroom. Having a tube (or two) sticking out of you with a bulb slowly filling with fluid throughout the day - yeah, it's enough to drive you batty, I promise you. And I feel like there's no end in sight. Normally the drains aren't removed until their output is below 20cc in 24 hours. Even after three weeks, my drains are nowhere near that.
I sent a message to my doctor's office so hopefully they'll have some advice for me tomorrow.
Monday, November 24, 2014
I thought I was doing a pretty good job of listening to my body, but man oh man, I guess I needed some rest. I started dozing in my recliner around noon. I woke up briefly when K came home from school at 2pm, but I pretty much went back to dozing until Hubby came home at 4pm. After that, I was down for the count. I slept until 7pm. Seriously - who needs that much sleep? Obviously someone who's had chemo, radiation and multiple surgeries over the last year and a half, that's who.
The down side to sleeping that much is that I had a sick kiddo at home who pretty much had to fend for himself. Thank goodness almost-teenagers are pretty self-sufficient, even when they are sick.
The up side to sleeping that much is that my drains slowed waaaaaaaaaaaaaay down. Maybe if I can keep my butt in the recliner for the next three days I'll be able to get rid of these stupid things sooner rather than later.
On a side note, please keep my mom in your prayers. She was supposed to have a PET scan tomorrow, but due to insurance woes, it has been postponed until Wednesday morning. I know she's anxious to get it over with and nervous about anything else showing up, so please send her some love and prayers for peace, courage and strength as she waits.
Sunday, November 23, 2014
I haven't been sleeping in my bed because I can't sleep on my side or my stomach, and I pretty much always sleep on my side or stomach. Sleeping in the recliner ensures that I don't do either. My right hip is starting to ache almost constantly, though, and my restless legs syndrome acts up on that side every evening. I'm not sure if it's because there's more fluid build up on that leg (that drain is always measuring more) or if it's just a random pain from trying to be so careful while I sleep. Whatever it is, it really is a pain in the rear. Literally.
If you're going to suggest that I try being more active, keep in mind that I'm still restricted in my activities. I did go to Walmart on Friday and walked all over the store. And I rode my exercise bike (very gently) last night for two miles. What I really need is a hot tub, but I wouldn't be allowed in it because of these pesky drains anyway.
My remedy last night was a walk around the house at 3:30am, half a percocet, a valium and a cup of tea.
Saturday, November 22, 2014
Technically I followed doctor's orders, since he said to wait two weeks. I did not follow doctor's orders on not wearing a seat belt, though. I haven't been wearing one when riding in the back seat, but I just couldn't bring myself to drive without it. The reasoning behind Dr T not wanting me to wear one is he doesn't want me to put any pressure on my chest, which the seat belt does. He doesn't want me to do anything to hinder the blood flow to my new parts. I can't even wear a bra! I understand it, but honestly, if I get into an accident, I'd much rather save my life than my newly constructed breasts! I did compromise, though, and put a clip on the seat belt to hold it loosely over my chest...no pressure but still safe. That's a win-win, right?
My legs are getting less painful by the day. I can actually reach down to pick something up off the floor! And I no longer cringe when I have to go to the bathroom. I still hate every minute of having these drains, though. Showering is a huge ordeal, partly because I get so tired, but partly because of the drains and the tubes and the gauze and tape and then having to squeeze back into the compression shorts.
I'm just ready for everything to not require so much effort!
Friday, November 21, 2014
I made a list of chemo tips for my mother.
She saw her oncologist and things are moving fast. She'll have a PET scan next week to make sure there aren't any pesky cancer cells anywhere else. After that she'll have surgery to get her port put in and her first chemo treatment will be December 3rd. As much as this all sucks, I think we both feel the same way - let's get this show on the road.
While the chemo "cocktail" used for colon cancer is different than anything I had for breast cancer, some of the side effects are the same. So while I can't be there for her during her chemo, I can share what I've learned from my own experience - things that helped and things to avoid.
She's not much of a researcher, and I am an obsessive researcher, so I scoured the internet today to find any helpful information about her chemotherapy. I probably overwhelmed her with email after email, but I always say knowledge is power. And one thing I've learned is that doctors don't always tell you everything. Either they don't want you to know certain things or they just don't think to tell you.
Mom was a bit shell-shocked at first. Every cancer patient is when they first have to digest the reality of their chemotherapy regimen. She rebounded quickly, though, and by the afternoon she sounded more positive and ready to move forward.
Thursday, November 20, 2014
- That her MO is not like my MO and she doesn't have to wait hours for her appointment!
- That she likes and feels comfortable with this doctor.
- That this doctor has the knowledge to come up with a successful treatment plan and a good bedside manner!
- That she's not completely overwhelmed with information and decisions.
- That she is given a chemotherapy plan that won't be too harsh, too often or too lengthy.
Wednesday, November 19, 2014
Tuesday, November 18, 2014
My second thought was, "What the heck is wrong with me?"
I really don't think I'm a "woe is me" kind of person (I try not to be, anyway), but I guess even strong, positive gals like me have to reach their limit sometimes. I'm just so damn sick of how much cancer is affecting my life. I'm beyond grateful to be healthy. I'm impressed with the medical advances that have been made and I'm so thankful for the skill my plastic surgeons have, enabling me to have reconstructed breasts that don't feel like gel packs.
But getting up out of the chair hurts. Every time. It takes me fifteen minutes to pee because I have to wrestle with my compression shorts and drains. Taking a shower takes monumental effort and wears me out for the rest of the day. I miss sleeping with my husband, but I don't dare try to sleep in bed because I'm not allowed to sleep on my side or my stomach.
I know I chose this reconstruction route and I knew what I was getting into. That doesn't mean I can't bitch and moan a little bit about how much of a pain it is (literally).
Aside from that, I have an afro. Am I grateful to have hair? You betcha. But I don't know what to DO with it. It's my same old puffy, thick, curly hair.... but it's so short that it doesn't do anything except grow puffier, thicker and curlier. It's insane.
Moving on to my mom....and the fact that she has to have chemo. She was supposed to come here to help us with the kids and help me when I came home from my surgery. That plan was nixed because of her own surgery. We've only spent one Thanksgiving apart since J was born. This will be the second. I hate that her fall holiday visit isn't happening. Her next plan was to come for spring break. Since I don't know when she'll start chemo or how long it will last, that trip may not happen either. I miss my mom. I hate that I can't be there for her. I hate that the cancer world I've lived in for the last sixteen months is now her world, too.
In early 2001 I had a miscarriage.
In early 2005 I had another miscarriage.
In 2007 Hubby lost his big brother in a motorcycle accident.
One month later Hubby lost one of his oldest, closest friends.
In 2010 we lost Hubby's mom to a recurrence of breast cancer.
Four months later we lost Hubby's step-mom to what we believe was a heart attack (she was only 52).
Not long after that my BFF's mom was diagnosed with breast cancer.
The next summer my BFF's sister had a major heart attack (at age 42).
After that my BFF was diagnosed with breast cancer.
The year after that Hubby's brother's wife was diagnosed with breast cancer.
In 2013 I was diagnosed with breast cancer.
Two months after that my friend's husband was diagnosed with colon cancer.
In 2014 I lost my dear friend to ovarian cancer.
A month later my dad had a heart attack and a major stroke.
Three months later my mom was diagnosed with colon cancer.
When Hubby and I said our vows, I know we meant every word. I just think it's about time the man upstairs gives us a little more of the "for better" parts and maybe puts the "for worse" times fewer and farther between!
Monday, November 17, 2014
Our family received some more not so good news today. One of the things surgical oncologists do during surgery is remove lymph nodes for testing. If the lymph nodes are negative, then it's all good and no further treatment is usually needed (at least for colon cancer). My mom's colon cancer was caught early and her surgeon was feeling positive about her outcome. Unfortunately, even doctors are wrong sometimes. Mom's surgeon removed twenty lymph nodes along with her tumor. Only one of them came back positive.... but that one is enough to mean she will need chemotherapy.
I'm really blown away. When I was diagnosed with breast cancer, I knew it was bad and I knew I'd need chemo. I hated it, but I knew it was my reality. When my mom was diagnosed with colon cancer and she said her doctors were optimistic that she would just need surgery, I felt the same way. I am so angry and shocked that she will have to go through chemotherapy, too. I know she's strong, I know she's healthy (other than that pesky cancer thing), and I know she has a great support system around her. She'll get through this no problem. But it pisses me off that she has to. Her doctor told her that the chemotherapy given for colon cancer is usually tolerated very well. That's fabulous, but who wants to "tolerate" chemo at all????
Right now she's in the wait and see mode until she selects a medical oncologist and gets in to see them. They will decide what treatment will be given and when she'll start. Then I'll warm up my research fingers and tire out Dr. Google so I can know what Mom can expect. (Yes, I'm "that" patient who refuses to sit by and blindly go with what doctors say.)
Please keep my mom in your prayers. I'm praying for health, healing, strength, peace and lifted spirits.
The silver lining to today's crappy day was this note that came home with K's report card:
Sunday, November 16, 2014
Saturday, November 15, 2014
Hubby and I are having a battle of the wills over my attending the tournament. I already turned over my dugout duties to some of the other ladies because I know there's no way I can do anything more than be a spectator. However, I don't see the problem with me doing just that - spectating. Hubby is upset because it's going to be cold and I'll be sore and tired, and the dirty, dusty softball fields are no place for someone recovering from surgery with open wounds. Ok.... I get that. But I will be bundled up. All of my "wounds" will be covered. We only live five minutes from the complex, so I don't even have to use the bathrooms there and risk the dirt and germs. K's games only last an hour, so I can come home, rest and use my own bathroom when needed!
I think I sound perfectly reasonable. Do I?
Or am I being a stubborn, rebellious patient?
Friday, November 14, 2014
All of this was an attempt to feel human again, as well as make myself presentable for my lunch date yesterday. It was a cold, windy day and my friend S brought me chicken noodle soup. She's the same friend who delivered the shower chair Tuesday. Do I know how to pick friends or what?
Thank you S. Love you!
Thursday, November 13, 2014
- I miss Allyson Hendrickson. I have our last text and Facebook messenger conversations saved on my phone and every now and then I'll go back and read them, just so I can "hear" her voice. She was wisdom and humor and warmth and light, and there is nobody else in the world like her.
- Jimmy Fallon is a riot. Almost every night I sit here watching him on tv and can't even believe the smartass little kid who sat behind me in study hall is now hosting the Tonight Show. He makes me laugh because he's as much a fan of his guests as anyone, and he can't keep a straight face to save his life.
- Hubby has been working from home this week. He didn't tell me he planned to and I didn't expect it, but I'm grateful for his help and his company (and his scrambled eggs).
- Yesterday I had a conversation with my kids' morning bus driver. He told me I have wonderful children and "a bus driver knows pretty quickly". Those kinds of things always warm a mom's heart. Especially when one or both of said children are in trouble at home!
- My dad called and left me a voice message the other day. MY DAD CALLED AND LEFT ME A VOICE MESSAGE THE OTHER DAY. Seriously. A month ago he wouldn't even talk to me on the phone because it was too stressful to carry on a conversation. Now he's calling and leaving me a message to say he's thinking about me and wanted to know how I was. He is walking with a cane and making jokes...fighter all the way. Three months ago we didn't even know if he would live through the week.
- I hate cancer - you know I hate cancer - but I hate it even more that cancer touched my mother. I'm a little selfish, knowing that she would be here with me and to take care of my family if she didn't have her own cancer to deal with. What I hate more than that, though, is that she has had to have one day, one hour, one MINUTE of pain, discomfort, fear or stress because of cancer. My mom is a ray of sunshine in everyone's lives and nothing deserves to try to diminish that, even for a short time.
- I try to be a good patient, but somehow it always works out that I want to be up when I should be resting and resting when I need to get up. I'm only one week post-op and I'm seriously sick and tired of resting.
- In another eff-you to cancer, one of my KCA sisters has a recurrence. She just finished her last Herceptin infusion last month. She's in pain, she has fluid on her lungs and an unidentified mass. She started chemo again yesterday - on her BIRTHDAY! Lyn, you are in my prayers. Buckle down and kick ass like the warrior you are!
- For anyone who questions my decision to go the reconstruction route that I did (instead of implants)... yes it would have been faster and yes, it would have been easier. However, even that is not guaranteed! I know of two women who are currently having problems with their implants and both will need surgery to correct them.
- Whenever I need to spend any time sleeping in the recliner, my kids fight over who gets to sleep with Dad. K has taken up residence on my side of the bed and I might need a crowbar to get her out! Hubby woke up yesterday hugging a stuffed sloth.
- I have no idea what to get my kids for Christmas. Am I just overwhelmed with other stuff this year, or are they to that hard to buy for age, or do they just have too much darn stuff???
Wednesday, November 12, 2014
There is nothing nice and neat about surgery. Everything is messy and bloody and no bodily functions are sacred. Having said that, poor Hubby has had to do more than his share of "dirty jobs". Between changing bandages and helping me to the bathroom to hand washing my compression shorts and emptying drains, he has done everything without complaint. (How he can do all of that and yet gag when he has to scoop the cat box is beyond me, but I digress...)
Last night he went one step further and removed two of my drains. Hallelujah!! I'm sure this was not on his list of the top one hundred medical tasks he'd ever want to do in his life, but aside from an initial greenish tint to his face, he soldiered on and got the job done. I think he was fine once he realized it wasn't hurting me, and now he's a pro, having removed two! Dr T told me we could remove (or have a trusted nurse friend do it) one on each side Monday or Tuesday. The rest can come out when they are producing less than 20cc per 24 hours. So hopefully in the next day or two we will be able to remove a couple more, which will leave me with a lot less discomfort and make me feel not so tied down. The remaining two will probably stick around for a while, but that's OK.
In addition to being married to a fabulously helpful guy, one thing I'm grateful for is online ordering! Hubby can cook, but doesn't really have the inclination to, or the energy, considering he's taking care of me, working from home, and being Mr Mom. It's pretty handy to place an order online and then all he has to do is go pick up our dinner! He did make me scrambled eggs and toast for lunch and we discovered he makes them better than I do! I told him he is now the designated egg maker in this house. Unfortunately, he was the designated egg pan cleaner (something that really skeeves me out).... I'll have to think of some way to encourage him to cook the eggs AND clean the pan!
Tuesday, November 11, 2014
My daddy served in the US Army during Viet Nam. I was always told that he was a cook in the army, but in gathering his paperwork for Medicaid after his stroke, I found his discharge papers. You know what they say? Sharpshooter! Ha ha. Go Dad!
Here is his picture from his Certificate of Citizenship:
Monday, November 10, 2014
Last night I slept from 9:45pm until 6am without getting up. Well, I did take a pain pill at 3am but that was for a headache and the pills were right next to my chair, so I didn't have to actually get up. Amazing how much more human I feel after a full night's sleep.
You don't realize how resentful you get of medical staff coming in all day and all night long. I know it's their job, and I really am grateful for getting excellent care. But between the nurses, the patient care techs, the residents, the doctors, the respiratory team, housekeeping and room service, someone was constantly coming into the room: checking vitals, turning on lights, making me get up to go to the bathroom, giving me a shot (in the stomach - OUCH!), emptying the trash, checking my oxygen level, listening to my heart, checking the blood flow with the Doppler, bringing me pills, taking my temperature, emptying drains, delivering (nasty) food, inspecting my incisions. There is NO privacy and no independence. And no resting!
It's nice to wear what I want, sleep when I want, get up without sounding an alarm, pee without announcing it and do all of that in the comfort of my own home.
I'll be honest - there is one thing I do miss about the hospital - the leg compression sleeves and machine they have you use after surgery to prevent blood clots. I did not have one minute of restless legs syndrome in the hospital - I LOVE those things! Last night I had to break out my meds and take a (very short) walk because my legs were getting jumpy. They let us take everything else home with us, why couldn't we just throw that machine in, too?
Sunday, November 9, 2014
Saturday, November 8, 2014
Do you smell that? No? That's because, for the first time in four days, I AM CLEAN!!! I won't lie, taking a shower was a monumental task that I was pretty sure I was going to pass out during, but I made it. I'm back in this silly old hospital gown in this silly old hospital bed, but at least I was able to clean up. And those shower chairs? Yeah, I totally get it now.
So.... my surgery went well. I now have two breasts made from my own tissue, which is the good part. I have two large, painful incisions on the back upper part of my thighs, which is the bad. I'm not really in as much pain as I thought I would be, but sitting down to go to the bathroom - OUCH! My plastic surgeon told me I will be "slouching" for a couple of weeks, and I can see why.
I was in ICU the first two days, which is good because I was able to get one-on-one care, but it was bad because that one-on-one care was happening every hour. Around the clock. Needless to say, Hubby and I didn't get much rest in that place. Last night they finally had a room open up for me, so we graduated from ICU. They still come in every few hours, turning on lights, checking my vitals, etc, but we did get some much needed sleep last night.
One of the things that is pretty cool is that they listen to each breast with a Doppler to make sure the blood is flowing through (because if it stops, the tissue dies and the flap fails). If you've ever had a baby, you know how the little baby heartbeat sounds on the ultrasound? That's what this sounds like. Pretty neat. Reassuring to know that that part of my body is alive and well.
I won't go into to much detail about this, but if you've ever had surgery where you had to have drains afterward, you know what a total pain in the ass they are. Well, I have SIX. I'm not liking that at all. Hopefully I can get rid of at least a couple of them before I get sprung, which should be tomorrow.
When I talked to K this morning, she asked where I was. I told her I was in the hospital in Dallas, and she said "Why are you staying there? The food is nasty!!". Ha. She was right on the money. I haven't had good luck with my meals. The first day after surgery I was on a clear liquid diet. I don't know why. The other times I've had surgery I was able to eat right away... Which is what you want to do after not eating for over 24 hours. Jello and Sprite just don't cut it. My first "real " meal was pancakes and bacon Thursday night. It was wonderful. Since then it's been all downhill. The French toast I ordered yesterday for breakfast was horrible. For lunch I wanted turkey and swiss on a croissant. They brought me a piece of swiss cheese on a dry croissant. This morning I went back to pancakes, thinking that was the safe bet. The pancakes and bacon were fine, but they forgot syrup, and didn't bring me any sugar for my tea. We even called back and asked for it and they never brought it. Have you ever tried eating hospital pancakes without butter or syrup? Don't.
Needless to say, Hubby went out to get us lunch today. I can't wait for a nice big refreshing iced tea!
Speaking of Hubby, you can't have him because he's mine, but he is the perfect hospital companion. If you ever have to stay in the hospital, you want someone like him with you. Whenever they try to make me do something not in my best interests (like take a shared room or put my dirty, worn compression shorts back on) he is right there to tell them "I don't think so". The gross tasks he's having to do for me are countless, and he does everything without complaint. He straightens my blankets, fixes my socks, brings me brownies and washes my clothes in the sink. See what I mean? Perfect! I'm so grateful for him, for his care of me and for his company.
Since my mother had surgery the day before I did, we have been commiserating via text about hospital food, uncomfortable gowns, fevers and pain pumps. Luckily she was discharged today and should be getting settled in at home right now.
Thank you all for all of the prayers for both me and my mom. We haven't had an easy go of it, but we are still standing strong. Well, I'm still in the hospital bed and she's probably in a recliner, but in our minds we are standing tall!