I have a very bad habit of trying to compartmentalize my life. I want everything settled, tied up in a pretty red bow, and organized neatly on the shelf. Running in one box, knitting in another, and cancer in that large box in the corner.
Rather than be happy with one all-encompassing blog, I periodically feel an overwhelming need to separate things out–kind of like when you don’t want the mashed potatoes touching the green beans on your plate. I felt like my cancer story took over this blog, so I started a new one–and then only wrote one post. And didn’t write anything here. Or on my running blog. And my knitting blog has also been severely neglected.
And that’s not to mention the gardening blog I tried out years ago, or the photography blog. I think I can still remember my husband suggesting that it might be difficult to keep up with all the different blogs . . .
Enough! Mind Margins has always been my home blog, the place where I can write my thoughts and experiences about anything I want. The byline “thoughts on being human” is there for a reason. The fact is, I can’t separate out anything that’s happened to me these past two years into separate little boxes. I think having all those boxes has actually kept me from writing–and I need to write. Running and writing are the best therapies, and God knows I need them both.
I will admit that I also needed this past year to process what I had gone through. Cancer didn’t end when I stopped chemo. In fact, in a way, that was the easy part. All I had to do was get through it. It was my 24 hr a day job for over six months. But once the chemo drugs worked their way out of my body (which took longer than I thought it would), I was left with a lot of what-if’s, whys, and what-nows. More than anything, I’ve spent the past two years learning to live with uncertainty. That’s something I’ve been working on my whole life, and will probably continue to do until the day I die.
Another reason I didn’t write was because I was embarrassed by the attention. You would think someone who shared every gory detail of having cancer, and who shares probably more than she ever should about everything else in her life, would love the attention. After all, no one made me write about any of it. Instead, I felt like a show off. And I have only myself to blame.
(Why did I never think of writing an anonymous blog??? Problem solved!)
My only intention in sharing so much about what I went through was to help other people who might be going through something similar. I found very few stories from other women who had ovarian cancer, and I felt the need to help someone else. That desire is still stronger than ever–and that’s why I keep writing about cancer. Life does go on, but it will never be the same again. And that big box in the corner, the one labeled Cancer? It’s getting smaller and smaller as the months go by.
Hitting the publish button is a scary thing. I cringe every single time I post something. The thoughts in my head range from Why would anyone care what I have to say to I sound like a complete idiot. Ultimately, I write for myself. I always have, since the day I first put my stubby pencil to a Big Chief pad. I write because I have to.
So I’m raising the white flag and calling a truce between me and my blogs. I’ll probably shut a few down. If surviving cancer has taught me anything, it’s to keep things as simple as possible, and to get rid of the stuff that’s not important.
Time to clean out some boxes.
(photo courtesy of petercui [Public domain], via Wikimedia Commons)
Top searches that brought people to my blog this month:
– i’m 63 will i definitely lose my hair during chemotherapy?
– golytely not working kids
– i did my golytely prep but it feels like something is stuck
– chemo day 14
Well, I have only myself to blame.
It’s been awhile. I’ve been busy. Very busy. So busy I pretty much stopped writing for six months.
Let’s just say, life is good. Very good.
Last year was an incredible year. I got married, was in the best shape of my life, had just come back from a vacation in Utah (one of my top three places on earth) with my son and his girlfriend, and had enough finished knitted items to toy seriously with the idea of starting my own little business.
And then at the end of May I went to the ER. And quickly discovered I had cancer. Ovarian cancer.
I won’t go into detail about that year. I wrote extensively about the experience here on Mind Margins. After surgery and chemo, I was declared cancer-free by December 2013.
It was an incredible experience. I am so lucky to have caught it early and to have survived. Two friends I made during that time, and the majority of women who were diagnosed with ovarian cancer last year (all years, in fact), weren’t so lucky.
Looking back at this past year post-cancer, I suppose I went through a modified version of the stages of grief. During treatment I was nothing but positive. I never, ever thought I wouldn’t survive. Post-chemo, however, was another story. Looking back on what I had gone through, and survived, I initially felt scared. I thought a lot about dying. That turned to anger. Then sadness. Then just plain depression. It didn’t last long, but these past few months I needed a break from all things cancer.
And every time I sat down to write, my fingers wanted to write about having cancer. My brain didn’t.
So I did everything but write–which means I got a lot of knitting done. I started running again. I spent a lot of time just sitting and thinking about what had happened and the things I learned from it. I put things in perspective and reorganized my life. My husband and I finally went on our honeymoon.
I grew my hair back.
And I knit. I knit a lot, sometimes for hours and hours. These past six months have been filled with family and love, appreciation for life, and learning to pick up where I left off. It sounds trite, but things that used to seem so important really aren’t anymore. When little things get to me now, it’s easier to see how unimportant they are. I don’t brood for days over them, like before.
I know how short life is, and how every moment is a choice. Either we embrace what we’re given and move forward, or we stay stagnant in resentments and feelings of injustice.
Relationships are important. Being kind is important. Never forgetting how short life can be is really important.
Though I haven’t been writing, I’ve been reading. I may not have commented on my friends’ blogs, but I have been keeping up.
I’m running again, and am up to 10 miles. I’m slower than I was before, but that’s okay. My oncologist says I’ve inspired her to run, and we’ve run two 5K’s together, both of them benefiting cancer. I even have my future daughter-in-law running with me. I’m also doing strength training and eating much healthier than before. Except for some residual chemo brain fog, I feel great. I’m not the same person I was before, and that’s a good thing.
I’ve learned a lot from cancer, but it’s time to release its hold on my blog. Here’s to more writing, more questions, and more thoughts on being human.
I’ve been procrastinating. I’ve been doing everything but finish the post I had started about my second round of chemo. I had planned on finishing the story. Instead, I’ve done everything but write about it. In all honesty, I’ve forgotten a lot of what happened. Whether from the chemo drugs or selective memory, I don’t remember as much as I thought I did. I made notes during that time, and we have video and photos, but I haven’t wanted to look at them.
The main reason I’ve been procrastinating, though, is nothing other than pure dread of reliving the experience. Now that I’ve put a little distance between what happened and my return to “normal” living, I much prefer the way things have turned out. It’s hard to leave the bright lights of survivorship and go back to that dark, scary place.
And so I keep putting it off. I write about knitting. Or I don’t write at all. I have enjoyed getting my life back on track and feeling good again. I do yoga. I run. I go for a walk. Last weekend I ran my first 9 mile loop around the lake since last May, with walk breaks, and I’m starting to feel as good as I used to. Running is still very, very hard. It’s taken me much longer than I thought it would to get my conditioning and stamina back. I still have to walk a lot, and after every run I am bone tired. But I realize every step, no matter how fast, is an accomplishment. Thankfully, I have good friends who still want to run with me, despite the walk breaks.
I have been very emotional lately. All those salute to mothers commercials during the Olympics always made me cry. Any athlete’s story that was highlighted made me cry. Even seeing the winning athletes stand on the podium made me cry! I seem to feel things more deeply now that I know how tenuous life can be.
Reading other cancer patients’ blogs makes me feel so sad for them. I love reading them, but I feel frustrated that I can’t help. I saw a bald woman walking her dog at the lake the other day and I instantly teared up. I wanted to run over to her and tell her how beautiful and brave she was for walking in the open without a scarf. I didn’t, and I wish I had. I was never brave enough to walk around without a cap, even at the cancer center.
I dreaded going back to the hospital for blood work a few weeks ago for my three month check up. I thought that sitting in the waiting room amongst the people going through chemo was going to make me want to cry. It didn’t, and instead I looked around at all the amazing, strong, upbeat people who were waiting for chemo. They all had hope, and it made me proud to know I was once one of them. Instead of feeling sad, I felt powerful for having made it through. I got to see the chemo nurses. Seeing my oncologist and her nurses felt like going to see my family. And my CA-125 cancer antigen number was a 9, the lowest it’s ever been.
I celebrated a birthday this month. It was, of course, a very special birthday, one I might not have seen if we hadn’t caught the cancer as early as we did. A year ago Saturday was the last marathon I ran before I got sick. There are lots of milestones ahead in the coming months, and I plan on celebrating them all.
The kids are all gone again and the house is a lot more quiet. We’re starting a large vegetable garden in the backyard and I’ve been eating a lot healthier than I was before. I love being able to enjoy and savor the taste of good, simple food again. Losing my taste buds and not eating were by far the worst parts of chemo. That, and losing my hair, which has grown out to about an inch now–with a lot more gray, dammit. My body looks different after being sliced open and having tubes inserted for chemo ports, one of which still remains in my chest.
I’ve changed. There’s no way around it. The first few months after chemo were joyful. Everything was shiny and new. I had my life back. I had dodged a bullet. That was so close! Nothing could touch me now. I was like teflon; all the small aggravations and worries seemed inconsequential and insignificant.
Now that things have settled down again, and I physically feel almost as good as I did before I was diagnosed, I’ve had more time to think about all that I went through. I’m a little more somber. The shiny, happy feeling is a little more tarnished. The fog cleared and I understood for the first time how serious everything had truly been. I could have died. Chemo was hell. How did I get through all that? Every slight twinge of pain anywhere in my body now makes me instantly worried. What if it comes back? is always in the back of my mind.
But I survived. Hopefully the cancer will never come back. If it does, I know I’ll be able to deal with it, like so many others have done and continue to do every day that they’re given. I’m only one of many who have gone through this. Some days I’ll feel sad about what I went through, but most days I won’t. There’s no reason to. I’m alive, I’m healthy again, and life is very, very good.
And one day I will finish the story I started, all in good time.
CHEMO WEEK 2, Treatment #3:
The first two chemo treatments were really rough. After years of running, and being a naturally outdoorsy type of person, it was so hard to lie around in bed and be sick. By Thursday of the second week, my third chemo treatment and the last one in the first three week cycle, my appetite had returned and I felt good. Just in time to get knocked back down again!
The week after the first two treatments I pretty much lived on white rice, homemade fruit smoothies, Ensure, and cheddar popcorn. I realized quickly that any calories I could tolerate were good calories, no matter how nutritious they were. Nothing sounded more disgusting than vegetables, raw or cooked. The chemo made me so sick I didn’t even want to drink water–which is bad because chemo can damage the kidneys if they are not flushed out enough.
After surgery and the first two chemo treatments, my weight was just south of 110. I was very thin, and I knew I had to eat. And drink.
The “electric” feeling I had after the first two treatments slowly dissipated from my body, and I was even able to meditate a little and do some very easy yoga. The meditation really helped me to calm down when I felt like I was going crazy. Meditation is usually one of the hardest things in the world for me to do, but it really helped.
I had also decided to cut my hair again, even shorter, because I knew its days were numbered.
I was starting to recognize certain people in the cancer center waiting room: the breast cancer woman who always came with the same friend, who rarely looked up from her iPad and looked like she might be a teacher (all teachers have “that look”); the tall, thin man wearing the track suit who moved to another seat away from us the first time I saw him–who this time said hello, talked about being bald, wished he’d cut his hair years ago, talked about how expensive it was for his wife to do her hair, discussed his wife’s friend who had a beauty shop in her house, and how we should go to beauty school and cut hair in our retirement; and another tall, thin man who smiled sadly at me and walked very, very slowly when they called him back to the infusion rooms.
I also met a possible distant relative. The receptionist told me one morning when I checked in that there were two patients with my last name in their computer. Turnage is a fairly uncommon name, and this was unexpected news. As we waited in the lobby, a nurse called out Turnage! from the wrong direction. I stood up, confused–and so did the man sitting next to me. We looked at each other, I asked “Are you a Turnage, too?” and he nodded. We agreed we had to be distantly related when he told me his family could trace their ancestry to two brothers named Turnage who emigrated from Ireland to North Carolina, which is similar to a story I’d heard years ago.
Sometimes you may discover you have more than cancer in common with the people in the cancer waiting room.
It was a very long day. I went into the chemo room at 8:15am and wasn’t done until 5:00pm. My oncologist’s nurse was waiting for me when I got to the chemo room and said that I looked great for someone who had such terrible numbers. Apparently my blood work showed that my potassium and magnesium levels were low and my heart rate and blood pressure were elevated. I knew the IP chemo had been tough, and the numbers agreed.
I was given a 6 hr potassium IV drip in addition to the Taxol IP. My sister stayed with me the entire time and we watched The First 48 Hours on A&E.
Chemo is boring. IV (intravenous) chemo is administered into the port in my chest. I sit in a recliner and let the cancer killing chemicals slowly drip into my veins. IP (intraperitoneal) chemo goes into the port directly into my abdominal cavity, on the same side where the tumor was located. For IP chemo I have to lie in a small bed and turn on my side every twenty minutes. I set the alarm on my phone in case I fall asleep (which is often). In addition to the chemo drugs, a massive amount of fluid is pumped into my abdomen. It’s not painful, but when IP chemo is finished I feel like a big juicy watermelon. And I have to go to the bathroom a lot.
Some of the drugs make me sleepy. I’m actually happy when I nod off because it makes the time go by faster. I rarely watch TV. Sometimes I turn it on just for the distraction, but mostly I just recline or lie in bed and somehow the hours tick away. I always have someone with me, usually my husband and either my daughter, Dominique, or my son’s girlfriend, Nicole, to stay with me and drive me home.
After the third chemo treatment, I thought maybe I could eat some Asian food with rice. My stomach and the chemo drugs gurgling in my belly had other plans. I will spare you the details of dinner and the effects of the IP chemo on my stomach. Maybe Thai food wasn’t such a good idea. Lessons learned . . .
If you’ve stuck with me through these tough past three posts, bless you. I promise it does get better. I don’t generally like to dwell on the hard times, but those who know me know that I don’t like to sugarcoat things. Chemotherapy is the hardest thing I’ve ever done, and in honor of all the people through the years who had no choice when they were dealt the cancer card, and were saved by chemo, I’m giving it the respect it deserves.
Chemo, I may hate you, but I salute you nevertheless!
Everyone has told me that my hair will start falling out fourteen days after the first chemo treatment, emphasis on WILL. I await this momentous occasion with trepidation, false bravado, and magical thinking that everyone is just plain wrong.
Monday: I am aware of the fact that my hair should start falling out in three days. While sitting in the car, waiting to order a sandwich at Great Outdoors, I feel something on the back of my head. I rub the spot and think, “Great. I’m going to be bald and have a zit on the back of my scalp.”
But there is no bump. Then I realize my scalp hurts, like when you wear your ponytail too high all day and then take it down and your hair is confused as to which direction it should bend. I’m thinking this is the beginning of the end. I’ve heard this is how it starts.
My husband (who is bald) wants me to shave it off, immediately. He tells me to “own it.” He is chomping at the bit, over the moon that, finally, someone will understand how he felt when his hair started falling out in high school. I’m glad I’m talking to him on the phone and not in person so he can’t see my huge eye roll.
I tell him I’m not going to shave my head until I’m certain that my hair is really, definitely going to fall out. I’m still holding out hope that I’ll be one of the lucky ones, that Taxol won’t affect me like it does almost everyone. I know I’m deluding myself, but you never know, there’s always a chance.
Time to pull out the scarves and practice tying knots.
Tuesday: My son’s girlfriend and I have a discussion about not shaving my hair until I’m absolutely certain that it’s really going to fall out. She uses the words “clumps” and “patchy.” She thinks if I cut it really short and it comes out in clumps, I might have bald spots. If I keep it long then at least the longer pieces might cover up the patches.
Am I really considering a female comb-over for myself? Has it really come to this?
The hardest thing of all is going to be losing my eyelashes. I can imagine myself bald, but I cannot for the life of me imagine myself without eyelashes. Eyelashes are pretty, and mine have always been long and worthy of mascara. I resolve to continue wearing mascara until I have only three eyelashes left. Less than that would look ridiculous, right?
Now, losing the eyebrows is an entirely different matter. I don’t mind losing them at all. Here’s to a pluck-free next three months! And how can I complain about not having to shave my legs for the next three months?
Wednesday: My husband can hardly contain his excitement about getting to shave my head. It’s like Christmas in July. Who knew he could derive such joy from such a weird thing? Is this every bald man’s secret dream, to have their wives lose their hair and get to shave it off for them??? I’m mildly disturbed but glad he’s willing to help.
Thursday: Definitely more pain on the back of my head why I wake up. Hair still hanging tight, though.
Friday: A trip out of town has put some distance between my husband and his razor, thank God. This trip was needed, if only for that reason. For the first time, after I wash my hair, I notice a small handful of hair. The exodus has begun.
While visiting relatives in Oklahoma, including an uncle who is battling cancer, my aunt shows us photos of his curly post-chemo hair. I can only dream of getting the curly hair I’ve always wanted. My aunt’s sister-in-law, also a cancer survivor, tells me how hers fell out within a week. Her advice: “shave it all off.”
Saturday: More hair loss. An unexpected trip to the ER later that night (due to an infection where they removed the IVF filter from my neck), and seeing the semi-long strands of hair all over the pillow are proof of the truth. This is really going to happen.
Sunday: I’m not happy about being in the hospital on my “good,” non-chemo days. Maybe this colors my thinking, but I’m starting to feel very sad about losing my hair. I thought it would be no big deal. I’m actually dreading having to shave it off.
Monday: I’m released and get to go home. I tell Michael it’s time. Let’s do this.
I’m crying before he even starts shaving. I’m surprised. Why is this so hard? I realize that for the first time in my life I will be bald. I had a full head of hair when I came into this word, jet black American Indian hair my mom always said, so this is something completely new. It feels like the time I decided to ride the double loop roller coaster for the first time with my son, how I would have paid someone any amount of money to stop the ride and pull me off before we got to the top of the hill and descended into the first loop.
I do not want to shave off my hair.
He gets out the electric shaver and starts shaving. I cry the entire time. I hate it so much.
Afterwards, I look at myself and think of all the things my female friends have said when discussing this: You’re going to look great. You have such a pretty face. I can’t wait to see what you’ll look like.
I look like a concentration camp victim. I look like a bug. I look really ugly.
I don’t want anyone to see me. I am so embarrassed.
What is up with me? I’m a feminist! It’s just temporary!! I am more than my hair!!!
I am almost bald.
It takes me days to get used to the shock of seeing myself in the bathroom mirror. I wear a scarf or hat and never take it off until the lights are off. What I could hide before is now visible to the entire world: I have cancer. I could pick and choose who I let know what I was going through before. Now, there’s no hiding.
When I reached a certain age, namely 50, I noticed I suddenly became a little bit invisible. Ask most middle-aged women and they will tell you the same thing. There’s a certain threshold a woman reaches when male eyes glance and slide past to younger, greener pastures. But there is also a freedom that comes with being invisible, a more carefree kind of existence, and you learn to accept that you have to make yourself visible with more than just your looks.
But now, suddenly, people were looking at me again. Their eyes would linger just a little longer than they should, noticing my scarf and lack of hair. It wasn’t mean-looking, it was more curiosity-looking. It’s summer in Texas and she’s wearing a scarf. Something must be wrong with her.
And that’s the problem right there. I hate having to show my weakness to the world. Even against something like cancer, I hate having to show others that there is something that may be stronger than me, something I can’t fight off or wish away.
Being bald is the manifestation of the weakness one has to accept when they have cancer. It’s the loss of control that’s on display for everyone to see. Before, I didn’t have to tell you unless I wanted you to know. Chemo, in addition to all the other harsh effects on your body, makes it visible for everyone to see. It takes your choice away.
It’s really okay, it’s been a great lesson for me, especially in giving up control. But when you’re forced to make yourself so vulnerable to others, to show them what you’re dealing with, there’s a lot of pity that comes from that–and I do not want anyone’s pity over this.
All I really want is my hair.
CHEMO WEEK 1, Treatment #2:
Back to the cancer center. This time I dressed a little nicer and carried a lighter bag. I was starting to realize what a time consuming thing it was to have cancer.
Today we would be accessing the IP (intra-peritoneal) port under my left breast for the first time to administer Cisplatin, the anti-cancer drug, directly into my abdominal cavity where the tumor had been removed. We would also be accessing the chest port at the same time to administer fluids and anti-nausea medicine.
Whereas yesterday I sat in a recliner, today I was in a bed (which was actually more like a gurney). This was so that when the Cisplatin was administered I could rock back and forth to coat the area where the cancer had been. It sounds more exciting than it really was.
I had been told that today would be a longer day, as in seven to eight hours of chemo. I was pleasantly surprised that I was done in only three.
I had also heard all about the horrible side effects of Cisplatin: abdominal bloating and cramps, nausea, vomiting, and upset stomach. The nurse told me that the nausea usually took a day or two before it showed up.
The nurse took a lot of time to explain everything she was doing, and she gave some great advice about handling the nausea. There were no immediate side effects this time, like there had been with the Benadryl and the restless leg syndrome the day before.
Before we were done, the nurse saw that my CA 125 test results were in from yesterday’s blood work. The CA 125 is “a protein that is a so-called tumor marker or biomarker, which is a substance that is found in greater concentration in tumor cells than in other cells of the body. In particular, CA 125 is present in greater concentration in ovarian cancer cells than in other cells” (courtesy of medicinenet.com).
The night before my surgery my CA 125 was over 450. The current test showed the level was now 37 before I’d even had my first chemo treatment. The nurse was amazed, saying they rarely see numbers that low before the first chemo treatment. The norm is anything below 35, so it was definitely a good number.
As we were leaving the center after chemo, I ran into my oncologist coming from the hospital. She had seen my number, had already called to tell my family physician the good news, and was ecstatic. She actually said that we had a good chance of “curing” my cancer. The word “cure” is not one you hear very often when speaking of cancer. It was the best thing she could have told me.
Jut like yesterday, I felt pretty good after chemo. My daughter, Dominique, and my son’s girlfriend, Nicole, took me to Target and Buffalo Exchange for some shopping. Other than feeling fatigued, I ate a good dinner and thought to myself: maybe it won’t be as bad as everyone keeps saying it will be. I slept well and hoped for the best.
The next morning, Saturday, I woke up and felt a little tired and queasy, but nothing too extreme. By lunchtime I felt nauseous. Really nauseous. And nothing helped. It got progressively worse as the day wore on.
I took the anti-nausea meds the doctor had prescribed (Zofran and Compazine), but really didn’t notice that they helped all that much. The Compazine made me feel woozy and drunk. All I could do was stay in bed and not move. The slightest movement made me feel nauseous.
The entire weekend was a battle. I was too nauseous to eat, but I knew that not eating and having an empty stomach would only make the problem worse. I ate some crackers and tried to drink water. I wasn’t used to being in bed all day, and being so inactive was driving me crazy. On top of that, the Cisplatin made me feel like there was electricity coursing through my body, so trying to stay still was impossible. My friends Liz and Todd came over to see what they could do.
Sunday was even worse. I had constant nausea and felt restless, anxious, and like I had lost all control over what was happening to me. If you’re the type of person, like me, who is very active and doesn’t even like to take an aspirin, having your body pumped full of poison is not an easy thing to go through. I thought I would first go mentally crazy, and then the chemo drugs would kill me off after that.
I ate nothing more than a small amount of white rice, more crackers, and drank water and Gatorade. The nausea was so bad that putting anything in my mouth, even water, made me gag.
Nicole, bless her heart, cooked dinner for the rest of the family. Within ten minutes of starting dinner I had to run to the back of the house to escape the smell. Within another two minutes, when the scent of sauteed garlic and onions wafted into the bedroom, I had to sprint to the bathroom. Once again, my stomach was empty. She felt horrible for not realizing how sensitive I was to strong smells, I felt bad for her for feeling so bad, and we opened all the doors to air out the house.
After dinner we all drove to Liz and Todd’s house. I needed the fresh air and a distraction from feeling like I was going to jump out of my skin. The house was starting to feel like a prison. It was great to see good friends and it took my mind off feeling so horrible. When we left, though, I was so weak and out of it, I almost passed out when I stood up from petting their cat. I literally felt myself falling backwards as Michael caught me from behind. I laughed it off and thought I was just sleepy.
I called my sister the next day and told her I didn’t know if I could do this, that chemo was scary and much harder than I thought it would be. She told me I “just had to do it,” that I didn’t have a choice, and that it was going to save my life. My friend Alex, who is a doctor, called to check up on me and gave some great advice. He told me I was going to have to find something to occupy my mind during chemo.
Trying to concentrate enough to read a book or write something was out of the question. I tried to meditate using some guided meditations I had downloaded onto my computer, which helped some. The thing that really got me through this tough week: watching all five seasons of Breaking Bad. Walter White and Jesse Pinkman might be two bad dudes, but they saved my sanity during this time.
I slept off and on all week, which was a blessing. I felt nauseous, lightheaded, and so tired I could barely walk from the bed to the bathroom without stopping halfway. I told my husband I understood why some people opted out and refused to do chemo, especially if they’d already been through it before.
The extreme nausea lasted until Tuesday, and Wednesday I could eat and drink a little more. The nurse had told me I was going to feel like a truck hit me, and she was right.
I still had one more treatment in this first cycle, another IP of Taxol, on Thursday, the very next day. Wednesday night, however, I mustered up the energy to meet my running group at Alex’s place for pizza afterwards.
Seeing all my friends, even if I couldn’t run, was the best medicine for me. And I had a great excuse for getting out of a hot, sweaty, Texas summer run.
CHEMO WEEK 1, Treatment #1:
It was my very first day of chemo. The first thing I noticed when I walked into the waiting room was that no one else had the same amount of stuff as I did. I looked like I was moving into the chemo center. My huge bag was overflowing with “cancer snacks” (fruit gummies, hard candies, nuts, lemon drops, and protein bars), socks, books, Kindle, iPad, and a soft blanket inscribed with my name given to me by my friend Heather the night before at dinner.
Why did everyone else have such small bags?
And then there was my husband, with his very professional video camera with the huge fuzzy microphone on top, and the still camera with flash hanging over his shoulder. My daughter, my son, and his girlfriend were also in tow. We got a lot of stares when we walked into the waiting room.
I think people wondered if we were famous.
I looked around at the other people in the waiting room. The breast cancer women were always visible because they wore a lot of pink, especially pink caps. The men were harder to pick out. Their baldness is a common thing. Being a bald woman is a pretty strong indicator that you have cancer, but for men their only giveaway is a visible chest port. In general, though, everyone looked surprisingly healthy.
It was also an extremely well-dressed crowd. I assumed people would dress comfortably for chemo. I wore track pants, a stretchy t-shirt, a cotton hoodie, and sandals. Most of the other women were much dressier. I felt downright shabby. But then again, not everyone was there for chemo, as the waiting room accommodates patients coming in to see their doctors, just as I had a few short weeks earlier.
Before seeing Dr K for a pelvic exam, I was called back to Fast Track for blood work. They would be accessing my chest port for the very first time, and I was a little nervous about that. It had only been inserted three days prior and the area was still sore and bruised. The nurse sprayed the port with a blast of ice cold Lidocaine, put face masks on both of us to prevent any chance of germs entering the port leading to infection, and inserted the needle. I felt it, but barely, and I’ll take that any day over inserting an IV into my wrist.
Afterwards I saw Dr K for a very quick pelvic exam, and then we were sent back to the waiting room where we waited for about thirty minutes before being called back to our chemo room. By this time I was very nervous.
Finally, we were called back. The chemo rooms at my cancer center are all individual rooms. Each room has a TV, DVD, a recliner, and two chairs for visitors. I settled into the recliner for my very first chemo treatment ever.
Right off the bat there was trouble. The very nice nurse told Michael she didn’t think he could record in the hospital. He explained that he was recording me for personal purposes only. Then my daughter got called out into the hall and I heard whispering. In the meantime, the nurse explained about the drugs she was going to pump into me through the IV port and exactly how chemo worked. She told me getting an IV port was a great decision, and explained how hard chemo is on the veins. Dominique came back into the room and Michael was called out to the hallway.
Great. Michael and that damn camera of his getting us all in trouble.
Eventually, the very nice head of PR came down to tell Michael that videoing in the room was not a problem at all, but I needed to sign a release form. Also, because of HIPAA and confidentiality, he was not allowed to video any of the patients (which we already knew). If we wanted to use any of the video for commercial purposes, that would also not be a problem, but we would have to fill out some paperwork. The hospital staff laughed nervously, explaining how this was all a first for them. They laughed nervously again when Michael took out his iPhone and showed them how anyone could do exactly the same thing he was doing, only without the expensive video camera, and without being hassled about it.
This was my “easy” chemo day, the day I would receive the drug Taxol–which is the drug that will be responsible for making me lose my hair. It was considered an easy day because it would take only a few hours to administer.
Benadryl was given first to counter some of the possible allergic reactions to the drug. I have only taken Bendadryl a few times in the past, in tablet form when my allergies were bad, and each time I felt like a drugged and dopey mess. I generally avoided it at all costs. This time the dose was much higher and it would be going straight into my veins.
The effect of the Benadryl felt like a palpable wave of dopiness, like being dunked in a huge vat of vodka. Within minutes my speech was slurry and I couldn’t finish a sentence without forgetting what I wanted to say. I felt drunk. The nurse told me I might want to just take a nap, but it was impossible because I couldn’t stop moving my legs. I later found out this was “restless leg syndrome,” caused by the Benadryl. My sympathies to anyone who suffers from this affliction. It drove me crazy. All I wanted to do was get up and walk around and make it stop.
After getting some additional saline and steroids, the chemo drug, Taxol, was finally hooked up to the IV tree and administered. The nurse put on her special blue chemo outfit (to protect her from the drug, which could cause, ironically, a higher risk of future cancer for herself) and I was ready to go home an hour later.
All in all, I thought it was pretty tame. I bragged about how “it wasn’t so bad after all” and how much easier it was than I thought it would be. I had heard nothing but horror tales of the difficulties of chemo, and it didn’t seem like that big of a deal to me.
I went home and ate normally that night, and didn’t seem to feel too many effects the next morning when I went back in for my next chemo treatment. This time it would be Cisplatin, administered directly into my peritoneum (abdominal cavity) via my second port, just under my left breast.
And this, my friends, would be an entirely different experience altogether.
The day before my very first chemo treatment I decided to spend my last day as a normal person, doing some of the everyday things that I love the most. My objective: to have fun and not worry about the next eighteen weeks of chemo.
First things first: I slept in late. It was heaven. I lounged around until 10:00AM or so, read a book, checked my email, blog posts, and Facebook, then finally decided to get up and take a shower. There was no hurry.
Next on the agenda: really bad-for-you, high calorie fast food from Cane’s (chicken tenders, fries, Dr Pepper, and extra Cane’s sauce). I know. It’s my guilty not-so-secret.
It wouldn’t be a day as a normal person unless I went to Target. I love Target. My motto has always been: If you can’t get it at Target, then you really don’t need it. And no, Target is not sponsoring this post. (Neither is Cane’s.) I bought a bunch of things I would consider “cancer snacks,” which was really nothing more than stuff that sounded good at the time: gummy fruit snacks, chocolate pudding, nutty protein bars, and a big bag of pistachio nuts. I had no idea if I would really want to eat any of this stuff if I felt nauseous from the chemo, but we would certainly find out.
After Target, my son’s girlfriend made a chocolate cake with vanilla frosting, my favorite. We had both been craving something sugary all week, so she was kind enough to make it. I had a huge piece and loved every single bite before dinner.
I spent a little time watching TV, relaxing, and gathering my thoughts about the next day. I was nervous, but not unnecessarily so. I wasn’t afraid, but felt uncertain about what it would really be like, and if it would be as bad as everyone said it would be.
I met a group of running friends for dinner at a small, local restaurant. We had been trying for several weeks to have a Ladies Night Out, but somehow Bill and Anil crashed the party and became honorary girls for the night. It was such a great evening, filled with talk of running, being sick, our lives, a little gossip, and exclamations over how good the food was. I had a tasty dinner salad with an excellent risotto with shrimp.
To end the night, all but two of us piled into our cars and went to see the movie Before Midnight. I loved the first two films, Before Sunrise and Before Sunset, and had been looking forward to the next installment for years. Literally, years. Maybe it was because being a normal person was exhausting, or because my mind was on the next day’s first chemo session, but I was disappointed. Maybe it was the build-up. Maybe I’m too much of a hopeless romantic. I still liked the movie, and should probably see it again in a different frame of mind and when I’m less worn out, but I found the talk exhausting. Maybe the pushing forty Jesse and Celine were both just a little too real this time for me.
I’m tired of real. I have enough real on my plate right now to last me a lifetime.
To top off my last day as a normal person, my daughter arrived from Portland to be here for me during my first two chemo sessions. In case I haven’t mentioned it before, I have the best daughter and son in the world. Having them both here to help me through this, along with my husband and my son’s girlfriend, not to mention my awesome friends, has been the biggest blessing of my life so far.
It was a perfect day.
Bring on the chemo!
I now have two more cancer related procedures under my belt and a new piece of plasticware in my body. Last week I had the IVC filter (aka the clot catcher) removed and a second chemo port inserted in my upper chest. Neither procedure was necessarily painful, but both were certainly uncomfortable and strange.
It was a very long day. My son and his girlfriend brought me to the hospital at 10:00am. We waited afterwards in the waiting room until 12:15pm, waited in the pre-op room until 3:00pm, and I was brought back to the room at 6:00pm. After recovering from the sedation for about an hour and eating a sandwich and chips, I got home around 7:30pm. Apparently Mondays are their busiest day and they had had no cancellations, like they usually did.
The nicest thing was seeing one of the two guys and the beautiful Kenyan woman who were there when the IVC filter was first inserted the night before surgery. J, the missing participant, called in sick that day. Having the same people there really helped make the procedure less scary. Amazingly, the nurse who was in charge of me during the procedures also knew one of the women in my running group. He mentioned Kim who was “always running crazy distances.” I asked if her last name was _____, and he couldn’t believe I knew her. It’s definitely a small world.
By the time I got to the room I was very tired of being on my back. I always sleep on my side and have never been able to get comfortable on my back. When they wheeled me into the room and closed the door to surgery, the door popped back open on its own. This happened over and over. The doctors scrambled and tried to barricade it with surgical equipment from the room, but the door wouldn’t hold. My nurse, A, would very calmly move the equipment the impatient doctors tried to jimmy-rig and calmly tell everyone that maintenance would be there soon and they would have to move it anyway. Then another doctor would get antsy to get started and move something else in front of the door, and A would very calmly move it once again. Over and over.
A maintenance guy finally came and unscrewed the hinge so they could open and close the door manually. Apparently there had been an override button that had been removed very recently that would have solved the problem from the beginning.
All of this took a full hour, and I was on my back on the hard, plastic bed the entire time.
Finally the doctors could get started with the first procedure: removal of the IVC filter. W, the Kenyan princess, swabbed my neck and chest with antiseptic and the “conscious sedation” was begun. I was told to turn my head to the left and not move, and a large paper sheet was put over my face and head. They made sure to tie it up in front of my face because I’m a little claustrophobic.
I had to wonder who was in charge of the music in the room. It was definitely some sort of classic mix, and there was a lot of Gordon Lightfoot and John Denver. Being a former JD groupie in junior high, I kind of liked it. Since I was already under sedation, I remember babbling to the doctors and nurses about how much my tough, inner city fifth grade students loved John Denver songs, especially “Take Me Home, Country Roads.” S said he didn’t think he’d ever even heard that song. (Really? Am I really that old?) I think the doctors thought I was a little weird, but I’m sure they’ve heard worse from patients under sedation.
After my embarrassing display of John Denver nerdiness, the doctors were on a mission to get started and GO HOME. I understood. It had been a long day and I was the last procedure of the day.
I just wanted off that uncomfortable table.
First I was given shots of Lidocaine, which hurts and burns a lot, to deaden the area on my neck. The procedure to remove the filter lasted about an hour and they even showed me what it looked like, dripping with blood, after they took it out. Pretty cool stuff. I asked if I could take it home but they wouldn’t let me. Liability issues.
After that they put in the port. Both procedures involve making a hole in the side of my neck and accessing a vein. For the IVC filter they sent down a wire into a vein in the middle of my chest, where the filter was previously placed, and they grabbed the little hook on the top and just pulled it out. It took a few tries (remember, they are leaning right over my right ear the entire time and I heard everything they said, every “ugh,” “aw,” and sigh).
Inserting a port seemed a little more involved and was a little more uncomfortable. After inserting a tube into a vein going up my upper right chest, that then goes down to the top of my heart, they made a small pocket below that in my chest and slid in the plastic port. Now all my chemo meds can be accessed through this port rather than having to have an IV each time.
I was glad when both procedures were done and I could go home. I didn’t realize how much I had been dreading the procedures.
A few hours later, at home, I looked at myself in the mirror and was aghast to see blue lines all over my neck, chest, and right shoulder. It looked like my veins had exploded.
I looked like a Smurf.
I thought maybe it was the contrast they had used for the x-rays. Then I got a little worried. I went online to do some super-sleuthing, but all I could find was something about calling the doctor if your lips and fingernails turned blue. Nails and lips were good. Skin, not so much.
I debated calling the on-call doctor. I felt okay. Nothing hurt. I decided to sit on the couch and do nothing.
Suddenly I had a thought. I went to the bathroom and wet some toilet paper. It was on my skin. The blue stuff was left over from when W had washed me down with antiseptic.
It all came off. I felt like the world’s biggest idiot.
I blame it on the sedation.
I’m not feeling well enough to write much since I started chemo this week, but here’s a twenty-three second clip just prior to my first chemo treatment. More to come!