One of the most important conversations I had with the oncologist before starting chemotherapy highlighted all possible side effects and how to go about managing chemo side effects.
Nausea, cold sensitivity, infertility, hair loss, skin dryness, neuropathy, low white cell count, low platelet count, risk of infection, mouth sores, etcetera. For each chemo regimen, the list varies, but nothing on any list is very appealing.
Knowing what might lay ahead helped me feel equipped and empowered as I started chemo. In fact after the first round of chemo, I thought I knew what to expect and talked to the oncologist about how to mitigate the most bothersome side effect that I had experienced. I felt confident that I was well prepared for dealing with this chemo thing.
Then came round two. Side effects were similar, except that the main side effect from round one was no longer an issue and the preventive measures I took actually made me miserable.
From round to round, I have found that the side effects can vary somewhat or other times widely. Sometimes one will be worse than another and just as soon as I have a plan with the oncologist to mitigate the most bothersome, another pops up and the first one doesn’t seem so bad.
Yes, it makes planning difficult. But sometimes, it is also a relief when nausea that had persisted from round to round suddenly isn’t a problem at all in one round. I still believe that being informed and prepared for chemo is preferable to going in without the information. I am grateful for sites like livestrong.com and the American Cancer Society that provide information about the side effects of chemotherapy for different kinds of cancer.
For me, managing chemo side effects is a little like playing a video game: Just when you think you have it mastered, you get bumped up to the next level where the environment is the same, but the variables have changed.
They say forewarned is forearmed and indeed I can say that at this point in my chemotherapy I am ready for just about anything.
Best-laid Christmas Plans Derailed by Family Illness
The best-laid Christmas plans derailed due to unexpected family illness. While on chemotherapy, I maintain a quiet, sequestered life to protect me from the risk of infection. Once I realized my chemo schedule would leave me free the entire week of Christmas, I made plans with family to spend the week at my elder sister’s home and go across town to my parents’ home for various activities, including gift opening and Christmas dinner. I anticipated this special time to enjoy with my loved ones. Little did I know a severe, highly contagious virus would sweep through the household, resulting in our best-laid Christmas plans derailed.
Annual Tradition of Admiring Christmas Light Displays Was Missing a Few Important People
Early in the week, it became apparent that sickness had hit my parents’ house. First one, and then another fell ill with a nasty respiratory virus, making it imprudent for me to be in close contact with my dear family. Thankfully, my sister’s family across town remained healthy, so I stayed nearby with the hope that the virus would pass quickly.
We had also all joined in a family meeting using Skype early in the week, so I began to think about Skyping with one sister who could not be with us for Christmas for gift opening. It seemed to be the next best thing to being there.
As Christmas dawned, family members were still ill, making it impossible for me safely join them for our planned celebration. So, we cooked dinner in separate kitchens across town, transported dishes for Christmas dinner and gifts, and then logged into Skype so that we could watch as gifts were passed around and opened.
Although I did not get the hugs I normally enjoy while home to visit, amazingly, the joy of Christmas surrounded us and we were able to watch via Skype as each one peeled back wrapping paper of carefully selected gifts. Skyping made us slow down and focus on each individual family member, appreciating the joy of receiving a well chosen gift and the resulting gratitude expressed. And, we sent one another air hugs and other expressions of love through cyberspace.
While we had seen our best-laid Christmas plans derailed, we still savored a delicious, potluck home-cooked Christmas dinner and celebrated this special time together through the miracle of modern technology.
When I first met with the oncologist about my impending chemotherapy regimen, he told me that most people do not lose their hair on this chemotherapy. Only about 15% would tend to bald. He emphasized that my chemo is a medium sort of chemo, which would not be too onerous. Unfortunately, several weeks ago I noticed I was losing hair on chemo.
All of a sudden, my hair started ending up in my mouth, in my food, all over my clothes and the floor. It was coming out in my comb and brush, lining the sink and the tub whenever I was near. Even the dust bunnies that accumulate on my hardwood floors are now somewhat blonde like me.
Since my oncologist had assured me I would not lose my hair, I was alarmed thinking that I was going to be bald. This was not supposed to happen to me! I was not supposed to be losing hair on chemo. Chagrined by my vanity, I felt doubly grieved: first, for losing hair on chemo and second, for feeling so mournful about my hair loss.
One day, I awoke with such terrible bed head that I had to rejoice that I still had enough hair to support this amazingly, ratted mess. The silliness of my appearance and the sheer volume reassured me. And, after all, hair grows back, and thankfully mine normally grows quickly.
As my hair continues to thin, admittedly I still struggle with how cancer and chemo have changed my life. I wasn’t supposed to be losing hair on chemo, but in my imagined version of my life, I wasn’t supposed to have an aggressive, fast growing cancer before I turned 50. I wasn’t supposed to have a port infection, either. Perhaps finding myself the exception to these medical statistics should make me feel exceptional, a stand out from the crowd. Still, I would settle for not being such a medical exception, unless it is to never have cancer again–in spite of the statistics.
Soon after receiving the news that I would benefit from chemotherapy, I began to research chemo and learned I could make the cancer detour easier on myself if I learned what should go in my chemo bag.
I found numerous posts on Pinterest about chemo bags. So, with the help of my family, I put together the biggest chemo bag I have seen in the chemo infusion room. Each chemo bag is unique to the patient, but there are certain things I have found help make time in the infusion room more pleasant.
My Chemo Bag Essentials
Family members have contributed to my bag. Because I get cold in the chemo room, I take a fleece blanket that my mother made me to keep me warm. Coffee Beans, the Build-a-Bear my youngest niece made me, keeps me company and has come close to celebrity status in the infusion room. Comfy, red sequined slippers from one sister keep my toes warm and pillowed. Encouraging words on smooth stones from my oldest sister and a friend remind me to have hope and to just breathe.
A few other things I include are reading material, music, snacks (especially saltine crackers for nausea and hard candy to mask the taste of saline when the port is being flushed or disagreeable medications start flowing) or a healthy lunch. I also take a journal and pen, art supplies to draw or color, hand wipes and sanitizer, and a mask so that I can go to sleep when the meds start to make me sleepy.
If you are wondering, “What should go in my chemo bag?” or have a friend asking that question, then I hope you find some of my thoughts helpful. Many have shared suggestions for how to prepare for chemo so you can easily find resources to support your loved one or yourself on your cancer detour. These resources have shaped how I decided what should go in my chemo bag. If you are on Pinterest, you may check out my Cancer and Chemo Board for some ideas I have found helpful.
Coffee Beans, the Build-a-Bear my youngest niece made me.
Other Chemo Essentials
Two things I always try to take to chemo do not fit in my bag: a positive attitude and a smile for the courageous patients around me; the compassionate caretakers who do all they can to help me to be well; and kind, efficient office staff who ensure my care runs smoothly. I believe those two things might be the most important of all.
When I began writing My Hijacked Life, I had no idea that an unexpected cancer detour was just ahead.
About the time I left off blogging last year, I had begun to lose my appetite and consequently, lose weight. Along with that, I would often have cold hands, heart palpitations, and I lacked energy. These signs were so subtle that I didn’t think much about them indicating that something was wrong. In fact, the unexplained 20 pound weight loss for someone who has been weight conscious for an entire lifetime, was a great boon. Since I was experiencing extreme stress at work and at home, I simply attributed the weight loss to life’s turmoil and pressure.
As 2015 dawned, I faced some health challenges. At the end of May, I contracted a virus that should have gone away in a matter of days, but stayed a full two weeks. Summer vacation began, but instead of staying up all night catching up on reading and or having movie marathons, I was going to bed at 9 p.m.
At the beginning of July, my mother and I took a once in a lifetime trip to Europe. Unbelievably, I was sick and tired the entire time, even as I was trying to fit in everything on my must see and do list.
Again stateside, I visited my primary care physician who told me it could take a month or so to get things under control, so I assumed everything was good.
Meanwhile, I began to ready things for the school year and in spite of flagging energy, I had things all set for the students’ arrival on the first day of school.
Just before classes started, a specialist ran a broad blood panel after I described symptoms I had been experiencing. The results showed I was extremely anemic. After teaching only one day, I was sent to another specialist who recommended immediate hospitalization for blood transfusions in preparation for tests to identify the cause of my blood loss.
Diagnostic tests revealed a cancerous tumor, so the same evening I had a CT scan before having surgery early the next morning. An experienced surgeon removed the tumor, leaving clean margins. Tests showed the lymph nodes and liver were clear, which was welcome news.
The recommended oncologist ordered additional tests to determine whether or not I required chemotherapy. After an excruciating three weeks, I sat flanked by family as the oncologist told me that I would need chemo: Another curve in my unexpected cancer detour.
I prepared to be off work for six months. Dutifully, I got my flu shot and had my teeth cleaned as recommended before starting chemo. On the Friday evening before starting chemo, after teaching all day, I returned to the hospital where my skilled surgeon installed a mediport that would enable me to receive chemo. On Saturday, I visited a local historical landmark with a friend. Sunday, I went to church and made lesson plans. Then, on Monday I was back at school for my last day with my students.
Before I knew it, I was sitting in a large chair with a tube connected to the mediport in my shoulder having various cancer fighting substances pumped through my body. I looked across the room at a lady who said, “You are too young to be going through this.” I wholeheartedly agree. Often, I seem to be the youngest person in the infusion room. So, to say my unexpected cancer detour has been surreal would be an understatement.
Life altering. Overwhelming. Redefining. A new normal. My very own B.C.: Before Cancer. Any of those might do.
I can be walking down a hallway and that truth suddenly flashes in my mind, my stomach lurches, and I nearly miss a step because that is the new me. I have had cancer. Hopefully my unexpected cancer detour will soon be in my past, not my future, but only time will tell.
While the events leading up to my unexpected cancer detour are indelibly etched in my memory, I can’t see the future quite as easily. I do not know what my life’s new normal will be, how I should plan, or exactly how this detour will shape me. Should I quit my job and travel the world using up my retirement or should I work for a few more years to maximize payouts in my twilight years? While the truth is that nobody knows what the future holds, that reality is painfully clear to me.
My oncologist tells me that chemo is a temporary life alteration, but this I know: for good or for ill, I am not the same and will never be the person I was B.C.: before my unexpected cancer detour.
Although my Christmas tree has been up and decorated for over a month, the busyness of the season has kept me preoccupied and in seeming perpetual motion–up until a couple of days ago. This celebratory weekend started off Friday with a favorite of my Christmas Traditions: an evening with a play and sing along of Handel’s Messiah in exquisite Memorial Church at Stanford University. The grandeur of the historic church as melodic voices raised the unequaled notes of Handel’s masterpiece.
Saturday, I finally settled on a recipe for the school potluck get together and went off to the grocery store. The funny thing is that I didn’t realize a parent of a child I have taught checks at the grocery story where I sometimes shop. Much to my consternation, when I got to the checkstand I was greeted by name before I even provided any form of payment with my name on it. At that point I realized who was going to ring up my purchase. Knowing somebody there helps me feel more like I am part of a community and not just an insignificant digit after the decimal point on the population sign of the third most populated city in California.
Once I had the groceries, I just needed a mini muffin tin to make the Spanakopita Bites I had settled on for the potluck. I tried to pop into a couple of overcrowded stores with ridiculously long lines of customers waiting to check out, I decided I would improvise somehow. Since I have lived this long without ever needing mini muffin tins, I realized it would have been a frivolous purchase. Instead, I chose to go with spanakopita cups made in regular-sized muffin tins and after my experience layering and buttering phyllo dough before adding the filling, I am certainly relieved I hadn’t purchased mini muffin tins. I doubt I would have made it to the get together. It would have taken forever. As it was, I was just a half an hour after start time, but still well before about half of the other attendees. It was a fun evening of chatting and talking about our upcoming break.
After cleaning up the dishes remaining from making my holiday Spanakopita Bites, which seemed like it took forever, I made a midday meal, creating even more dishes.
I geared up to make a holiday dessert for another upcoming get together. As a girl, one of my favorite Christmas traditions was making Christmas cut out cookies. Although she usually mixed up the dough, my mom would marshal my three sisters and me into the kitchen to cut out, bake, and decorate gingerbread and sugar cookies. My warm, happy holiday memory of cookie making is one that has persisted and a tradition that I have duplicated over the years. However, for the past couple of years I have lived in a house with a very small kitchen that was not at all conducive to cooking. Now that I have moved into a home with a spacious, newly remodeled kitchen, my joy in cooking and baking has resurged. I find it satisfying and relaxing, kitchen clean up notwithstanding.
Just as I was getting organizing things for baking cookies, a friend unexpectedly popped over. We had a makeshift dinner and then after a quick run to the store for essential ingredients for gingerbread, began mixing up cookies. Just like when I was little and my sisters and I all worked together in the kitchen, my friend measured out the dry ingredients while I creamed and mixed the rest. We each took a turn mixing the two together and when it was divided and wrapped for the refrigerator, we whipped up some buttercream frosting for decorating our spicy little figures before settling in to watch a Christmas movie while waiting for the dough to chill.
After waiting as long as possible in the face of the enticement of spicy gingerbread, we went back to the kitchen and armed with our own rolling pins and bits of dough, we started rolling and forming our Christmas gingerbread cookies. As I rolled and cut the dough, I thought about how long it had been since I had made Christmas cookies and then suddenly got caught up in the joyful rhythm of rolling, cutting, and placing cookies on my quickly filled baking sheet. Before long the cookies were out of the oven and cooling on a wire rack. In the meantime we mixed color into bowlfuls of frosting and began assembly pastry bags for decorating our gingery shapes. Anxious to begin, the first too-warm cookie caused the frosting to run. So, I slowed down and let the rest cool a little more before deciding how to decorate each one.
In spite of the fact that I ended the day just as it started–with a sink full of dishes to be washed–I have a deep sense of contentment and accomplishment. Although I have few baked cookies left to show for my efforts, I am filled with the joy of sharing a simple holiday tradition, inviting someone to share my kitchen, and devouring decorated gingerbread cookies and icy glasses of milk in wreath-decked glass holiday tumblers.
Making political phone bank cold calls was never something I envisioned doing. As an introvert, the thought of talking to some unknown person on the other end of the line was a rather daunting prospect. However, recently, I became part of something I normally avoid: political action. In part because of the extreme polarization of the political system in the United States and also due to my experience living overseas for a number of years, I normally avoid discussions about politics and do not really engage with the process except for getting out to cast my vote and proudly wearing my “I Voted” sticker. However, a couple of the races in the recent elections in California had the potential to impact my life in rather significant ways. Consequently, when volunteers were requested for precinct walking and phone banking, I realized I needed to be involved and participate in a phone bank for a local election.
Contrary to my expectation, phone bank calling was virtually painless. I found it was relatively non-threatening. Most people let the unrecognized phone number I was calling from go straight to voicemail, but a few kind souls took a couple of minutes to listen and a few agreed to consider voting for the candidate I supported. Others said they had already voted. Still others said they have moved and not eligible to vote in the school board election or simply were not the person I thought I was calling. Gratefully, not one of these wary voters was rude or slammed down the phone in my ear.
After a while, I found the calls to be more of a challenge and less of a threat. In fact, I was proud of becoming more natural with the script and making it through my entire list of telephone numbers in the two hours I spent calling.
Unfortunately, my effort turned out to be in vain. The candidate I supported lost the election. But, I think I may be hooked on making political phone bank cold calls. And who knows, maybe I will even take a summer job as a telemarketer!
Having technology on tap can make life very much convenient. They say when it rains it pours and in recent months I have found it to be true, especially in the case of various kinds of technology that have become quotidian necessities. But my non-relationship with technology needs a little bit of background. Over the summer, I moved from a quiet cottage to an apartment in a remodeled Victorian on a well-traveled street in the third largest city in California in the heart of Silicon Valley.
Soon after moving, the screen on my trusty laptop went a pixelly green and then black. Absolutely nothing. Although I am not a hardware savvy, I could tell the screen was at the end of its life of useful function. So, I put it away and just pretended it did not exist for a couple of days. After letting it rest, I again tried to boot it up and got the same blank response from the display. When I had done this a couple of times, I slowly awoke to the reality that this computer needed some serious attention. However, as I was still in the throes of moving, I did not have the time or energy for it at that moment.
Busily settling into my new-old home, I was intent on finding just the right spot for each thing, and in many cases the right spot was the Salvation Army donation center just a couple of blocks away. However, in the process of moving furniture around late one evening, I ended up with my well-used and fairly elderly tablet falling about four feet and landing with a resounding boom from the impact of its metal cover against the historic hardwood floor. At first, it went all red and white stripes and black screen that were sometimes scrolling and sometimes static. In one moment of thoughtlessness, I was not just down one laptop, but one laptop and one tablet!
The good news is that I was busy unpacking, cleaning, and settling in. As a matter of fact, I was so occupied with pressing household tasks that I practically quit eating. While it was a pleasant surprise to accidentally lose weight, that is a subject for another day.
For a few days or maybe a couple of weeks, I didn’t miss my ailing technology much at all. But, as I settled into my new-old home, I found that not only were my laptop and tablet kaput, but my cell phone received an inconsistent and weak signal and my little television did not receive even one local station!
By now, I felt like things were getting out of hand! With life readying to move into high gear, I decided to take my laptop into a nearby repair center to ask what it would involve to repair or replace. After a big move, my budget for replacement was non-existent, so I hoped for a simple, economical repair. The tech at the service center confirmed the display that was in fact faulty, not the hard drive or motherboard or anything related to information processing. However, it would still cost $500 to replace what I call the screen. I suppose the screen is pretty important since the display of data on the computer is indispensable. Well, I already knew I could buy a new tablet for $500, so I simply had to decide which option would work best for me.
In the meantime, with desperation for technology and the ready connection it brings to people far away starting to set in, I decided to look into tablet repairs. Since the aging tablet was no longer under warranty, I learned the cost of the repair would be as much as a new tablet. Armed with the knowledge that the tablet was not worth fixing, I conveniently started gently and strategically banging it around trying to get something inside it to reconnect and give me a decent display. Finally, one of my frustrated taps against a solid surface resulted in a grainy, green pixel display. I was over the moon. Finally, I could reconnect with the 21st Century world! My tablet green pixel display tablet went with me everywhere and before I knew it, I had knocked it off of a counter and it had landed glass face down on the stone tile floor. With apprehension, I picked up the tablet and held my breath as I turned it over to look at the display. Not only was the picture still discernible, but it was the clearest display I had seen in months!
The good news is that tablets provide much of the functionality of laptop computers, so there was a lot I was able to accomplish with my trusty old tablet. Life went on and I developed a new normal as I limped along with the combined efforts of my resurrected tablet, an old, fossilized laptop, and a hare-brained mini notebook. Each one provided a slightly nuanced function in my newly emerging technological world. Somehow, it worked. It was neither efficient nor enjoyable, but it worked and life moved along–tediously, but at least we were moving along.
After more than two months of making this tedious ensemble of technological wonders work, I found a shop, Friendly Computing, in Redding where I could have my laptop repaired for less than half of what it was going to cost in the third largest city in California. Although I had to leave it there and return to life as I know it in the city, over the weekend I was reunited with my laptop and its beautifully crystalline display.
Suddenly, life is quite a bit less tedious and infinitely more clear! Now that the majority of my productive technology is back in working order, perhaps I will find the desire and creativity to solve the issue with my lack of television stations or maybe I will just give the television a good tap!
That’s right! I’m decking the halls in October. My Christmas tree is decorated and the house is mostly decked with holiday ornamentation. A friend came over last weekend and we decided some Christmas cheer would really cheer us through this autumn. We put on some Christmas music and dug through storage totes looking for just the right things to brighten things up.
Some of you may be shaking your heads and saying it is too early. And, your anti-materialist sentiment might equate my premature decking of the tree with overspending and an overemphasis on material goods. However, those of you who know me will remember rightly that I am not all about material things.
The simple reality is that this time of the year gets really busy. I turn around once and it is Halloween. I turn around again and it is Thanksgiving. I turn around yet again and it is New Year’s Day. Christmas is a mere memory and I have missed it.
On top of my exuberance for all things Christmas, I find that life experiences have also shaped why I feel the need to have my Christmas Tree decorated already. For a number of years I lived in Ecuador, where neither Halloween nor Thanksgiving is celebrated. So, everyone, not just stores trying to boost lagging sales, puts up Christmas décor with soaring Holiday cheer and expectation.
In that tradition, my premature Christmas tree is lighting the way to a brighter and more promising winter.
Sometimes I contemplate rewriting a Jane Austen Classic to make all the characters meet with the poetic justice their comportment demands. Many Jane Austen novels, both print and celluloid versions, are old friends. I find familiar comfort in the oft read characters and settings that transport me to simpler times. I applaud the tidy neatness of how Austen sets her vain, proud characters in their place, but elevates her humble egalitarians. A fan of happy endings, I enjoy Austen’s neat denouements with the inevitable banishment of sadness and grief, which may even have been brought into the lives of characters by their own poor or selfish choices. Love and goodness always triumph.
However, there is one detail in a much loved story that leaves my simplistic nature dissatisfied: in Sense and Sensibility, Miss Lucy Steele’s conniving nature pays off. She ditches Edward Ferrars, her diffident, disowned fiancé for his proud younger brother, gains the esteem (and fortune) of her new mother-in-law, and lives comfortably in spite of her self-serving machinations. I find that aspect of the novel difficult to accept, but all too parallel to life. I would like for such intrigues to utterly fail and yield absolutely no net result.
But, life isn’t like that. So I guess Austen was right to let Miss Lucy Steele gain greater status and remuneration from her wealthy mother-in-law than the pious Miss Elinor Dashwood.
Actually, I do not think that Elinor would have minded the turn of events at all. In my reading of the story, Elinor’s principal enjoyment in life was entirely independent of her income or situation. She found practicality, duty, honor, and commitment to be far greater wealth than capricious favor bestowed or withheld based on one’s performance. While noble and admirable, Elinor’s attitude would not have put food on her table or a roof over her head, so I am profoundly grateful that Colonel Brandon gave Edward Ferrars the living at Delaford and that Mrs. Ferrars relented and gave Edward and Elinor a small annual income to help them along. It was just enough to be comfortable and independent without being ostentatious or proud.
So all things considered, I guess Elinor’s lot in life was far superior to Lucy’s.
But, if I were rewriting a Jane Austen classic or creating an “Austenesque” novel of my life, I wonder if I would write myself in as Lucy or as Elinor.
