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Living Through Cancer
When You Love Someone With Cancer
Guest blogger – Jana Nelson
Pedicures, vacuum cleaners and other gestures of love
Taking care of care givers
Don’t get me wrong, having cancer sucks. And while I have not been diagnosed with cancer, I feel a bit like a survivor – because I have intimately loved people with cancer. I’m at four but considering the broken world we live in, I don’t expect I’ve reached my limit.
My grandfather had cancer in his eighties. He was diagnosed, thumbed his nose at most medical advice and lived another decade. God bless him!
My mom was diagnosed with breast cancer when I was in college. It was scary but a bit far away. By the time I found out about it, a plan was already in place. Mom bravely chose to have a mastectomy, opted out of radiation and reconstruction, spent the next five years taking Tamoxifen and committed herself to healthy, intentional living. She handled it so easily and gracefully that after my initial fears were relieved, I never really associated my mom with cancer. Fast forward 20+ healthy, happy years, when a series of unusual symptoms found my mom in the emergency room. What we first thought might be blood pressure problems turned into a discovery of advanced cancer in her lungs and brain. 15 months later after giving it all she had, she gracefully exited this world in the arms of her Savior, leaving a permanent hole in my heart.
Six months after my mom’s death, a tumor was found in my dad’s sinuses. I’ll be honest. I had a few choice words for God at that point. But after a successful surgery and seven weeks of radiation, my dad is cancer-free.
And then last month it was Bonnie. I hate cancer.
I don’t pretend to know first-hand what cancer is like. What I know is cancer, once removed. I know what it feels like when the people you love the most receive news that rips your heart out. And I know what it’s like to feel helpless. I have juggled schedules and driven all over the countryside for countless appointments and procedures, shuffled young children hither and yon, rearranged bedrooms to house my beloved sick parents, ignored my very sympathetic husband and generally put life on hold while I loved someone who had cancer. I wouldn’t dream of trying to tell anyone what to do for a cancer patient. But I can tell you what was done for me – the person helping to care for their loved one with cancer.
You often hear people with cancer admit that it’s difficult to ask for help, awkward to be taken care of and uncomfortable to be the focus of so much attention. If you are one of the care givers, receiving help feels worse. With both my parents, but particularly during my mom’s long and difficult journey, I can tell you about the love that was lavished on me…and I wasn’t even the sick one. I often felt like a fraud. But with the clarity that comes from hindsight, and with humility and gratitude beyond words, I readily acknowledge that my friends carried me on their shoulders so that I could support my mom. Their extravagant care, that made me so uncomfortable, is one of the most precious gifts that God has given me in this life.
While every situation is different, my hope is that my story might prompt your creativity in supporting those that you love. Because I was loved so well, I now know how to love others who are walking in my shoes. I am prepared to share from the abundances of riches I received.
Here are a few things I learned:
SICKNESS IS EXPENSIVE – Half of my mom’s care was with me in Dallas and half near her home, a four-hour drive for me. I’m a stay-at-home mom and my sweet husband carries the financial burden for our family. A friend gave me a $500 Visa card to cover gas and travel expenses. And often hugs and handshakes included cash.
MOMMY GUILT IS ON OVERDRIVE – I have two young children. At the time of Mom’s diagnosis they were in Kindergarten and 1st grade. I worried constantly about all the shuffling, travelling and just plain lack of energy I had to give them. Countless friends babysat, did car pool pick up for me and just generally filled in the gap for us. Family friends even included my two children on their annual trip to the State Fair of Texas, a brilliant memory for them that they still talk about.
SERIOUSLY, I HAVE TO COOK?! I am not a natural whiz in the kitchen. I blame my mother. However when I was being pulled in every direction, I could not even fathom meal planning. Yet, our family was fed for months. Despite my protests about not being the sick person, a calendar was created and meals arrived regularly. Restaurant gift cards were handed to us. Dinner invitation came regularly. It is embarrassing how well we ate during that season of our lives.
THERE’S A STRANGER IN MY BED – Needless to say, my husband took on the lion’s share of managing our little household. I was meeting myself coming and going, away as much as I was home. But because he loved me and my mother, he held it all together and never complained about being ignored. An anonymous gift of movie tickets and a restaurant gift card came at just the right time for a much-needed date night.
ARE MY ROOTS SHOWING? With everything going on, I had no time for myself and I even felt guilty thinking about superficial things while my mom was so sick. A friend whisked me off for a pedicure and then paid for it. We just sat and talked and it was heaven. I needed someone to remind me it was okay to indulge in a little luxury – living is what life is all about, after all.
LIVING IN A PIG STY – When you are going non-stop, cleaning your house is the last thing on anyone’s mind. More than once, friends showed up and just cleaned. And when my vacuum cleaner wouldn’t work, they went out and bought me a new one. I swallowed my pride, accepted their unbelievable gift of unconditional friendship and love.
If you love people, my best advice is to try and meet their physical needs. Don’t ask or they’ll tell you they’re fine. Obviously everyone has different boundaries so think about who your friends are and how you can best show them love.
My other tip is to remind care givers that they aren’t forgotten. I received cards, emails and texts that carried me though my exhaustion some days. When mom was sick, it didn’t seem fair that life went on as usual for everyone else. Just knowing that Mom and I weren’t forgotten was golden to me.
My prayer and expectation with cancer is always restoration and remission. I’m so grateful that I’ve had that with my Dad and I fully anticipate a cancer-free life for Bonnie after this season has been completed. But sometimes the answer isn’t what we hope. In my case, God’s plan was for my mom to be healed…just not here on this earth. And when my heart was broken wide open and I was weary to the bone, my sweet friend Bonnie packed up her bag of healing, got in her car, drove five hours to be with my family to celebrate the amazing life of my mother. She stayed in our home and she offered my family her very best –her gifts that met our physical and emotional needs with massage, acupuncture, chocolate and tissues. I’ve always loved her but those few days, I loved her just a little bit more.
My story is but one. My list doesn’t even scratch the surface. Each gift came just when God knew I needed it. Each one was a blessing, a treasure. None surpassed another. They were all jewels, not just for me but for my husband and kids, and my mom – the one I had the privilege of helping. Behind each gift was a friend, someone who actually spent time, initiative or money to do something for me. For their tangible outpouring of love, I will before grateful.
So look around. See who needs you. Get on out there and love someone.
The Hair Blog
Warning: Bratty Tantrum Ahead
I thought about calling this blog entry something like Hair Today Gone Tomorrow, Hair We Go, Not So Hairy Situation, or something funny and cute like that. But I don’t feel funny or cute. I feel naked and cold and insecure. But I knew that I had to write a blog about hair loss since it is such a huge symbol of cancer.
I didn’t want to have a head shaving party. I don’t want to walk around bald to celebrate my strength and confidence and prove that my true beauty is inside…blah, blah, blah. I know what kind of person I am inside. I am constantly being surprised on this journey by my strength and that of those who are in this with me. Just when I think I can’t take anymore – I do. That’s because of my faith. I really believe that HE is in control and that I CAN do all things through Christ, who strengthens me. But I’m not always happy about it.
Here’s the thing about my hair. I’ve never had a gorgeous body. I am short and chubby. I am not graceful. I am not athletic. And my feet are too big for my height. But I always had fabulous hair – thank you mom. It was thick, black, curly, and versatile. It did what I told it to – except in extreme humidity but nobody’s hair can stand up to a Texas summer. But I didn’t appreciate it. I actually complained sometimes that I had too much hair. I am kicking myself in the butt for that one now. I miss my hair. It kept me warm. It gave me a sense of security. I never realized how I used to wrap my hair around me in uncomfortable situations until I reached for it and it wasn’t there. Hair doesn’t equal beauty but have you ever seen a bald Disney princess? I am no princess but I personally felt better with long hair. And who doesn’t love when someone else plays with your hair? It’s so soothing and calming. Although he is sweet and keeps telling me that I’m beautiful, it just doesn’t feel the same when my husband runs his fingers through the stubble on my head. My eyelashes and eyebrows are thinning out, too. It’s just annoying and looks weird. On the bright side, I don’t have to shave my legs or arm pits.
It’s not all about my vanity. Up until now I have been able to hide the fact that I have cancer. I have been very transparent and honest about the whole situation but until I lost my hair it wasn’t truly real. I could still look in the mirror every day and at least look normal. I could go about my day and forget about cancer for a while. Now I look in the mirror and the bald head staring back at me screams “You have cancer!” It literally shocks me to see the stranger in the mirror every time. Besides the pink ribbon, baldness is the sign of cancer. Most women aren’t bald on purpose unless they also have many tattoos and facial piercings. I suppose that is an option. I would look totally normal in Austin but that’s just not my style. And my husband said no to that. So instead, I wear a wig which I am grateful to have. And even though “it looks just like your real hair,” it’s still obviously a wig. It’s not me. It doesn’t feel good. It actually feels like I’m walking around with a stuffed animal on my head. I know “it’s just hair,” and “it will grow back,” but that’s not the point. The point is that I have cancer and I can’t hide it or escape it anymore. And I don’t like it. I don’t like that now I look sick. I don’t like that it makes people uncomfortable and they’re not quite sure how to relate to me now.
As much as it sucks to loose my hair, there are some awesome things about it, too. Like these people who shaved or buzzed their heads to show their love and support for me.
Sweet Bruce sporting the purple band that says “Kicking Cancer’s Bon Bon” that he and Jana and their kids are selling as a fundraiser for me. They call me Bonnie. And showing his love on the back.
Stacy’s Mohawk. The first thing she said when I told her that I had cancer was “When can we shave our heads?” Followed by “Can we do mohawks? What about henna tattoos”
I’m quite happy as we leave Luby’s and I head over to the office to see a patient before I head home. I’m still on a steroid high so I feel great – and a little smug, I must admit. Chemo wasn’t that bad. I don’t see what all the hoopla is abou…ugh…wait…is that…ugh…where’s that medicine? Ok, how does this go? Take this one first. Wait 30 minutes and if you’re still nauseaus take the second one. Wait 30 more minutes and if you’re still nauseaus take the last one. The last one isn’t for nausea. It’s Ativan. You might still be nauseaus but you’ll be passed out so you won’t know. Needless to say, I slept like a baby that night. Unfortunately, my poor husband didn’t sleep well at all because he kept reaching over to check my pulse.
Day 1 after chemo, Wednesday, I wake up early again and I feel good so I do my workout. Have I mentioned how much I like these steroids? I feel a strange combination of super powers mixed with fatigue and mental confusion. I feel slightly nauseaus throughout the day so I wear magnets on acupoints PC6 and ST36 all day. That and the mini saltines keep the nausea away. I only work half a day, because I’m trying to take it easy, and then go for my regular hair appointment. Although, it’s probably pointless since everyone says that my hair will fall out promptly on day 14. Still, I am hopeful (and in denial) and I want to look good even though I have cancer – at least for the next 14 days – so I get my hair done. But I know that it is the last time that I will see Veronica for a while.
Day 2 after chemo, Thursday, I am struggling to get out of bed. No more steroids until the next round of chemo. My body feels heavy and I’m a bit nauseaus. Saltines and ginger ale help but I still feel queezy. Wow. It’s a long fall from the steroid high I’ve been on for the last 3 days. Luckily, the doctor said I could have coffee. “Good morning, friend. You smell soooo delicious.” Aaahhhhh, yuck! It tastes like metal. Ok. Now I’m mad. I knew chemo was going to kill my taste buds and I was actually looking forward to that a little. I figured I would eat less if food tasted bad and drop a few pounds. But my coffee?! That’s going too far. I drink it anyway because I need the caffeine today.
The first stop is the hospital to get a shot of Neulasta. Neulasta is given after every chemo treatment to stimulate bone marrow and white blood cell production. Chemo kills everything, including infection fighting white blood cells, and drastically compromises the immune system which puts you at a high risk for infections. This is why chemo patients must stay away from large crowds. Ok, no problem there. It’s inconvenient but not bad so I’m off to work. I get through the day in a bit of a fog and I am so grateful when my friend, Julie, comes to give me an acupuncture treatment. The acupuncture settles the nausea, clears my head, and brings some peace back to my body. I slept like a baby again that night.
Day 3 after chemo, Friday, I can barely move from my bed. It feels like a bad hangover and I can definitely tell that I’ve been poisoned. There is a war going on inside my breast and I can literally feel the tumor sizzling. The tumor is pissed. “Yeah, that’s right. You should be pissed because you’re dying, biyatch!” It’s painful and I’m exhausted but I have to work today. Cancer is expensive. I put up a good front for my patients but this is tough. I can literally feel my blood cells dying and the qi draining from my body so I nap in between patients and I can’t wait to get home and collapse into my bed.
In my dream I’m looking at an x-ray of my bones and I’m watching them deteriorate before my eyes.
Day 4 after chemo, Saturday, I wake up crying because the pain in my bones is so bad. I’ve never felt anything like this before. The Neulasta is working. That’s a good thing, I guess, but it hurts so much and the ibuprofin and tylenol that the doctor told me to take aren’t working. Really? Is that the best you have for this kind of pain? Even worse than the pain in my bones is seeing my husband’s face and recognizing that he is in pain, too. He wants to help me but there’s nothing he can do. He would take the pain if he could but he can’t. So he does the only thing he can. He gently wipes away the tears and reminds me that this will all be over soon. He tells me that he loves me and soothes me back to sleep.
The bone pain is much worse in the morning so by the afternoon I feel well enough to go for a walk. It feels so good to be out of bed and get some fresh air. But we don’t go far before it wears me out. It’s so frustrating! Last week I was strong and had enough energy to keep working out and now I can’t even walk half a mile. So I go back to bed and spend the rest of the weekend sleeping and watching more Breaking Bad. I don’t even like this show. Walter White has become such a jackass and I feel sorry for Jesse. But I can’t stop now. I have to know how it ends.
Day 6 after chemo, Monday, I wake with what feels like the worst hangover ever. I’ve made myself so sick with ibuprofin and tylenol that I vomit for the first time. Now the room is spinning and any movement makes it worse so I shut my eyes and lay as still as possible. I have no choice. As much as I hate to do it, I have to cancel work today. By mid-morning the vomiting and dizziness has stopped but I’m still in so much pain. I don’t dare take anything now for fear that I will just continue to vomit so I just lay in bed and cry. My mother in law, Barbara, Auntie Arlene, and sister in law, Kathy, come into my room to comfort me. I’m so frustrated and I tell them that I can’t do this 5 more times. It’s hard for them to see me like this so they do the best thing they know to do. They begin to pray over me and I am comforted. I am so grateful for this family. I don’t know what we would do if we weren’t staying with Kathy right now. She is amazing. She takes care of her own family including 2 rambunctious boys and still takes care of us, too. This sucks but it would be so much worse if I had to worry about everyday things like food or laundry. Kathy takes care of our needs before we even think of them and I am so grateful. I think about those people who are going through this alone and I know that I am forever changed. I will no longer be able to go through life in sweet oblivion because now I know. I have to look for opportunities to help those who are not as fortunate as I am to have such incredible friends and family.
It takes more than a week before I feel like myself again. Just in time to see my doctor for a follow up after the chemo. Good news. The chemo is already working and tumor is shrinking. She explains that the bone pain is a good sign because it means that I’m healthy and my bones are responding well. Well?! No. Not well. It hurts! She says that next time she will give me a stronger pain medicine and a stronger anti nausea medicine. Ok. Why didn’t she just start there in the first place? She explains that they don’t know how each person will react so they have to start with the minimal drugs at first. I suspect that the insurance company has something to do with it too. She promises that she will give me the better drugs next time. Um…yeah you will or I will be such a pest.
Chemo was horrible but I got through it and I feel that now I know what to expect so I will be better prepared next time. In the meantime, everything tastes awful and my mouth is raw. Hopefully the ice chips will help next time.
Thank you so much to Julie Rhodes, Ann Mowat, Allison Fleming, Lisa d’Angelo, and Bebe Keville, for the acupuncture, cranial sacral, and facial treatments which really helped get through the week. You ladies are angels whom I am honored to call friends. Most of all thank you Irwin family, especially Kathy, for opening your home to us and taking care of us. We love you and don’t know what we would do without you.
Chemo Part 1 – The Red Hot Sexy
It’s the first day of chemo. I’ve been awake since 3am. At first I thought it was because I was stressed but I find out later that it is due to the steroids they gave me. I have to take them the day before, the day of, and the day after. I’m wide awake and have so much energy. I guess I can see why people get into trouble with these. It’s kind of fun.
As the morning passes, I get everything ready for the day. Although, my wonderful friend, Ashlie, has already thought of everthing. She has packed a bag for me with almost everything I will need for today including a pillow, blanket, games, socks, and other things. I appreciate her so much and I tell her that she is way more thoughtful and sweeter than I will ever be. In addition to my bag from Ashlie, I pack a cooler with ice packs and frozen water bottles. Chemotherapy causes peripheral neuropathy, meaning that your hands and feet lose blood circulation to the nerves and become numb. What?! Are you kidding? I insert tiny needles into people for a living. I can’t work with numb hands. The frozen water bottles are for me to hold during the treatment so that the tiny capillaries will constrict and my extremities will be protected from the chemo.
Stacy, Keith and I walk into the treatment area which is just a room with about 9 lounge chairs. The room is full of people already getting their treatments. Everyone is talking, laughing, and having fun. It looks more like a pic nic than chemo. Some of the women tell me that they look forward to chemo day because they get to see the others. It’s like a sorority. I never pledged, but I’m in. As I look around the room, I am struck by how young everyone is in the room. I later learn that most of the women are in their 40s. Is anyone else shocked by this? When did cancer become a young person’s disease? More on that in a later post.
We meet with the doctor who, for the first time, gives us good news. The tumor is large. It is 6cm but there is absolutely no evidence that it has spread anywhere except to a couple of lymph nodes and she expects the chemo to get that. What a relief. Now I can stop thinking that every cough is lung cancer and every ache is bone cancer. A 6cm tumor? OK. Let’s do this.
I pick my lounge chair and ask the nurse if I can have the bags before she starts administering them to me. Sabrina is very agreeable and friendly and brings them so that Stacy and I can pray over the bags. I thank God for my wonderful friend who is there to support me. Always. I thank Him for the medicine that will heal me. I pray for strong and swift healing with no side effects.
Yesterday I asked Stacy if she had a colored sharpie. Today she showed up with a rainbow of colored sharpies. That’s my girl. We begin to write messages on the bags of chemicals. Messages of love, hope, and healing. Some of the ladies are watching us so I begin to explain to them about The Hidden Messages in Water. It’s a beautiful and interesting book by Dr. Masaru Emoto in which he conducts several experiments with water and ice crystals. You should read the book but I will summarize it for you. In one of the experiments, Dr. Emoto filled glasses with regular tap water and wrote different messages on the glasses before he froze them. He wrote love, hate, joy, anger, and other different words. As the frozen water melted he looked at the ice crystals under a microscope. He found that where the positive words were written, the ice crystals were beautiful, complete, and perfect each time. But where the negative words were written, the ice crystals were distorted and incomplete. This is important when you consider that the chemo is liquid and the human body is Roughly 75% water.
My sweet husband had to go to work so Stacy and I settle in. This is going to take about 4 hours. We pass the time by talking, reading, and watching Netflix. It may not have been a good idea to start watching Breaking Bad at this time. Walter White and I are fighting cancer at the same time. It’s slightly depressing but I can’t turn it off. What’s that saying about train wrecks? I don’t really feel very much as I watch the bags empty into my body other than my mouth is becoming dry. Next time, I have to remember the ice chips. More on that in the next post.
The last drug they give me is called Adriamycin. It is in a syringe and they push it through rather than drip it. It looks like red cool aid. It is nicknamed “The Red Devil” or “The Red Death” because it is so toxic. What kind of sadistic person came up with that? Who wants that in their body? Not me. So I rename it “The Red Hot Sexy.” “Oh yeah. Gimme some of that Red Hot Sexy.” See? That sounds much better doesn’t it? Everybody wants some Red Hot Sexy. Despite the new moniker, this one gets me. My chest tightens and I start to feel a bit loopy. This is the first time I can actually feel the chemo. I can see what all the hype is about with this one but by the time we were leaving, the last lady left besides me was asking the nurse when she got to have her Red Hot Sexy. This just might catch on.
I’m still jacked up from the steroids when we leave and I’m hungry so Stacy takes me to eat at Luby’s. LuAnn platter anyone? As a kid in a small town, we didn’t have many restaurants so it was a big treat to go to Luby’s in the mall. Sometimes the strangest things bring us comfort in tough situations. All in all, chemo wan’t so bad this day. But, lest you think it is all just unicorns and rainbows, you should know that the next post is titled “Chemo Part 2 – The Pukey Painful Poison.” You’ve been warned.
Cancer, “Ain’t nobody got time for that!”
– Kimberly “Sweet Brown” Wilkins
Cancer is a full time job. I’ve already had 7 doctor appointments in the last month and I’m not even done. In the previous 12 years combined I’ve been to 2 doctor appointments other than my yearly lady exam so this is a real inconvenience. But as my good friend, Jana, says – “God doesn’t care about our convenience. He cares about our hearts.” Jana’s mother, Wilma, beat breast cancer in 1988/89 but passed away last year after another year long battle with this disease. Wilma was the kind of woman who elicited strong emotions from people. You either loved her or you didn’t. But even if you didn’t, you soon loved her anyway. I like to think of Wilma directing the angels in Heaven and mobilizing them on my behalf.
In the last 2 weeks I have been preparing for chemotherapy. That included surgery last week to install the port through which the chemo will be administered. It is called a “Power Port” which I like. I like to think of it as the place where they will fill me with special powers instead of poison. It is on my left side right under the collar bone. You can see a slight bulge under the skin but it’s not too noticeable. The problem is that was my one good side to sleep on since the tumor is on the right side and now it is sore from the surgery. So now I am forced to sleep on my back which is uncomfortable and annoying. These are some of the things they don’t tell you.
Also last week, I cut my hair to prepare for chemo. I figured it was going to fall out anyway so I may as well cut it off. It was just long enough to donate to Locks of Love so that makes me feel better. Personally, I don’t like short hair on myself. I think I look like Betty Rubble. But I am consoled when I think of somone else, who has perhaps gone through chemo, who gets to enjoy my hair.
Yesterday I had a CT and bone scan. Today I had an echocardiogram. Tomorrow I will have an MRI. Next week I have a follow up appointment for the port surgery. And then I finally start chemo. In between all the doctor appointments there are the countless calls to schedule, reschedule, take care of payments, deal with insurance…aaaahhhhh! And I still have to run my own business and take care of my own patients. To make it more fun, (I’m being a smart ass, what a surprise) I have begun taking 20 mgs of melatonin per day to protect my heart, kidneys, and brain from the chemo and it makes me sooooo tired. I feel slightly hung over all day and I didn’t even get to enjoy the party that usually comes before the hangover. Seriously, ain’t nobody got time for this! I need a cancer assistant! Luckily, I do have a lot of help when I ask for it. But I am terrible at asking for it. That, my friends, is at least one of my lessons in all of this. I’m usually the caregiver and I’m not used to needing care or help. It makes me uncomfortable to be honest. But again, God knows what He’s doing building character, strength, humility, patience, and whatever else I don’t even know I need.
The lessons are not all for me. And this cancer is not all about me. I look around at my friends and family and I see how this is affecting them and I can see God at work in them too. It’s amazing to see what is happenning. People I don’t even know are praying for me, sending me messages, and asking how they can help. It’s really beautiful and humbling. If you’re my friend on facebook then you know that at least once a year my status reads “People Are Crazy.” People ARE crazy. But they are also good. They’re just looking for an opportunity to show you.