Tagged: mucinous adenocarcinoma
Boxes with Bows
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.
Apparently I do this with my blogs as well.
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)
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This is What Happens When Cancer Takes Over Your Blog
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.
– Angela
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Picking Up Where I Left Off
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.
My friends thought it would be funny to shoe polish my car while I was running to commemorate the loop.
So funny.
So, so funny.
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.
The huge mulch pile we had delivered that had to be transported to the backyard. You can tell how excited I was. But at least I’m no longer the bald headed lady who lives on the street.
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.
Look at all that hair! Yoga dog just wants a good belly rub.
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This is Harder Than I Thought It Would Be
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.
Two ports, tubes, and the top of the nine inch surgical scar.
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.
Chemo paraphernalia
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.
Celebrating the news with my daughter.
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.
If I wasn’t in bed, I was usually on the couch.
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 was too exhausted to stand up and blow dry my hair.
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.
Going from the bed to the bathroom.
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.
The White Rock Running Co-op
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My First Chemo Treatment
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.
My port is all ready for it’s first dose of chemo.
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.
Showing off Heather’s snuggly monogrammed blanket.
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.
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My Last Day as a Normal Person
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.
The best people in the world!
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.
I’m holding the beautiful blanket Heather gave me, inscribed with my name.
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!
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New Plasticware and Smurfdom
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.
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Day One of Chemo
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!
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Even Rock Stars Trash Their Hotel Rooms
I’ve been strong. I’ve been positive. I’ve been a “rock star” patient (according to the nurses in the hospital). But today, finally, reality is starting to set in.
I have cancer.
It isn’t something that is just going to go away. I may battle this for the rest of my life. I will heal from surgery and jump right into chemo. I will essentially poison all the cells in my body to get rid of the cancer cells and hopefully trick them into submission.
But one day they may decide to come back. Then, the battle begins all over.
I’m not trying to be pessimistic. Today I take a hard look at what I’m up against. It’s all part of the show.
They’re not trashing their hotel room, but they look like they might be thinking about it.
Photo courtesy of: Ted Van Pelt [CC-BY-2.0 (http://creativecommons.org/licenses/by/2.0)%5D, via Wikimedia Commons
Last night I ordered some scarves and hats from the American Cancer Society so I will be prepared when my hair falls out. For the past two weeks, since the doctor told me my hair will most definitely fall out, I’ve thought it’s no big deal that my hair will fall out. Today I know that’s BS. It’s going to be a HUGE deal for me. My hair is below my shoulders. What is it going to be like when my hair starts coming out in clumps? When I wake up and see clumps of it on my pillowcase, or see clumps of it slide down the drain in the shower? What will I look like without eyebrows? Without eyelashes?
And something I thought I’d never do: I’ve even found myself getting angry and thinking WHY ME? I did everything right: I had children, I breastfed them both for a year each, and I took birth control pills when I wasn’t pregnant–all protective factors against ovarian cancer. I’ve run ridiculous distances for the past seven years, I don’t drink, I’ve never smoked, never done drugs, and I eat organic as often as I can afford to. All that wasn’t enough to protect me from cancer.
Why am I having to go through this?
I don’t always believe that things happen for a reason. Sometimes bad things just happen. No rhyme or reason, they just do. It sucks. I understand that. I accept that in the Russian roulette of life and disease, I got cancer.
But it doesn’t mean I have to like it.
The outpouring of support since I started sharing my story has been incredible. Overwhelming, to a point. It’s hard to hear over and over how “strong” I am. I don’t feel strong, I feel realistic. I am a fighter by nature. I won’t roll over and play dead. I’ve always said: I’m going to live forever. Cancer certainly isn’t going to change that.
But today, after weeks of smiling and staying positive, I’m allowing myself to feel this exhaustion, this numbness as I accept that I have cancer and that the battle has just begun. I think that I’ve been very positive up to this point, but this is my reality today. And as I’ve stated over and over, I’m not one to sugarcoat anything. There will be days like this. I knew there would be, and that’s why it’s not a big deal. It will pass.
So having a bad cancer day can be like trashing your own hotel room. You put on a good show, do everything that’s expected of you, then you go back to your digs and get a little crazy.
Despite this one bad day, in the end I will win, and I will win big. And I’m going to bring as many women and their families over the finish line with me as I possibly can. I don’t know how yet, but I’m going to make it happen.
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Pacing the Tiger’s Cage
My legs want to move, my brain says it’s time to do something, but my incision and internal organs say, heck no, all we want to do is lay around on the couch. Grrrr.
I definitely overdid things on Thursday after getting good news from the doctor. The staples came out, we found out the cancer had not spread to the lymph nodes or internal organs, and I thought I was all that. Okay, I still had cancer, and a rare form at that, but death wasn’t knocking on my front door. Heck, he wasn’t even in the neighborhood!
So what did I do? I had lunch with my sister, my son, and his girlfriend. I went to Half Price Books, walked around the store, and bought knitting books (full disclosure: I did have to text everyone and tell them to come find me under the Arts and Crafts sign, sitting in a cushy, padded, wingback chair, probably fast asleep by the time they got there). I met my running group for drinks. I had a late dinner with some of them. I had brunch the next morning with my closest friends.
Some of the WRRC when they’re not running.
I had a blast. Seeing friends and family has kept me sane throughout this entire experience. But yesterday I was exhausted. My incision hurt and it was uncomfortable to walk. Today is the same. Setback. I was doing so well. A rock star. Now I’m just restless and impatient.
I haven’t had a really bad day since this all began. I haven’t had a meltdown about having cancer. I haven’t gotten angry and shook my fists at the gods screaming, “WHY ME???” I’ve been surprisingly accepting and realistic about the whole thing.
Cancer can happen to anyone.
I’m reading the Gilda Radner book It’s Always Something about her battle with ovarian cancer. It’s a great book, but shocking that it took almost a year before she was diagnosed. Things are better now, almost 30 years later, especially as far as treatment, but I can’t help but be saddened that there is still NO screening for ovarian cancer.
Dr K told me that being diagnosed as stage 2 is very rare. She only has ONE other patient who is a stage 2. The majority of her patients are either stage 1, when the cancer was caught early either accidentally or because of torsion (twisting) and pain, or the more advanced stages 3 and 4. To me, that’s shocking.
The torsion, rupturing, and pain I experienced were the best things that could have happened to me. They literally saved my life. On the flip side, I have a rare form of ovarian cancer, and I fear that the doctors won’t know exactly which drugs to treat it with during chemo to send it into remission. I will get more information the next time I go to the doctor, but it scares me.
A good run would do me a world of good, but that’s out of the question. In the meantime, I’ll keep pacing the tiger’s cage, back and forth, over and over, until I can one day break free and return to my “normal” life once again.
Photo courtesy of: Dcoetzee (Own work) [CC0], via Wikimedia Commons
Mind Margins 