Finding a balanced life after chemo has been a challenge since going back to work. While I was on medical leave from work during chemotherapy, I had ample time for exercise and cooking healthy meals when I was well enough.
Cooking
I enjoyed trying new, healthy recipes in the kitchen and had a lot of satisfaction in knowing that I was doing something positive to regain and maintain my health. Even still, I enjoy cooking at home and generally choose to come home and eat, rather than eat out where I do not know what the ingredients are in the dishes. However, now that I am back to work, I find that I have much less time to spend in the kitchen to try out these new dishes. Instead, I opt for simpler fare that I can warm up or cook in a few minutes after coming home from a tiring day in first grade. In fact, I think it was scrambled eggs for dinner twice this week!
As time goes on, I hope to find a better balance of life and work, but since I returned to work for the last two weeks of school the flurry of activity consumed most of my time and energy. Hopefully as I continue to recover more of my strength and stamina over the summer, I will find it easier to return to a more balanced life that includes a little more time in the kitchen when school resumes in August.
Exercise
As often as I could during chemo, I would walk. I tried for at least a half an hour a day, but on some days I simply couldn’t get outside for it. However, as time went on, I found that I really enjoyed the natural mood elevation I got from taking a walk. And, friends would sometimes walk with me, making the outing doubly enjoyable. But now that I have begun the Living Strong, Living Well program and have gone back to work, I no longer have the time and energy for these daily outings. Teaching keeps me on my feet most of the day and the Living Strong, Living Well exercise program provides a different kind of exercise that I quite enjoy. Nevertheless, I find I miss my long walks around the neighborhoods near my house. I miss looking at nature and meeting new people along my customary route. I do not know quite how to find balance in this area, but hope that over time I will adjust to the new forms of exercise and not miss my walks quite so much.
Without a doubt, finding a balanced life after chemo will be a process, but I am anxious to maintain my healthy patterns that have helped me to feel so robust and positive about the future. If you have any suggestions for how I might achieve this, I certainly hope you will share your words of wisdom. Or, if you face a similar struggle, I hope you will share that as well.
As always, thanks for continuing with me on the journey of life!
On Tuesday, life took a major shift from cancer patient to cancer survivor when the oncologist cleared me back to regular, everyday life. With the exception of taking care to not put too much pressure on the mediport site, I can do just about anything I used to do. And, Monday, it is back to work. So, little by little, I am venturing out into the world and resuming some of those normal activities that were restricted until this week.
Grocery Shopping
Naturally, on the way home from the oncologist’s office, I stopped by the supermarket to pick up some fresh fruit that I could enjoy without have to peel to eat. Unpeeled raw fruits and vegetables were restricted from my diet until given the green light after chemo, so I was anxious to get some of my seasonal favorites. Surprisingly, instead of finding going into the grocery store exciting and freeing, I found it a little overwhelming because of the number of people in the store. I bought minimal fixings for salad and quickly exited the store. Nevertheless, I thoroughly enjoyed eating lettuce, raw carrots and unpeeled tomato.
However, the following day, I set out at a different time, in a less crowded location, and found delight in selecting berries, grapes, apricots and nectarines–none of which are going to be peeled. Meals have been fruit heavy since then, to the delight of my taste buds! Although I may continue to seek off times to shop, as much as possible, until I overcome my discomfort with the crowds, I am enjoying picking out fresh fruits and vegetables to reincorporate into my diet.
Living Strong, Living Well
This past Monday, I began the Living Strong, Living Well program at a nearby YMCA. The professor from Stanford University who facilitated the orientation session emphasized that the program’s focus was wellness, so we were not obligated to state what kind of cancer we had had or anything to do with our treatment or the disease. Instead, she asked us to share what we hoped to get out of the program and something we valued.
These instructions fit in perfectly with my goal in joining the program, which was to transition from cancer patient to cancer survivor, and to no longer be defined by the disease that gripped me, but by who I am as a person. It was incredibly freeing to introduce myself and to say what I wanted to gain through the program and what I valued. Not to have to tag on anything about the diagnosis, the emotional roller coaster that started after receiving a cancer diagnosis, or the agonizing months of treatment was a redefining moment and one more step in seeing myself as a someone who is healthy and thriving.
Back to School
In preparation for my return to school for the last eight days of instruction before summer break, I needed to touch base with the long-term substitute teacher who has been in charge of my class and my first grade teaching partner before Monday. It was bittersweet heading back to school yesterday to meet up with them, but the anxiety I felt before arriving, and the immediate coughing fit that overcame me upon my arrival, quickly disappeared as I was warmly greeted by colleagues and students.
Maybe someday my hair will grow long and thick like it was in 2009
I must confess I still find it difficult not to protest when people comment that I look good and that all the rest I had must be the reason. Because my work colleagues have not accompanied me on the cancer detour, and in fact have not even been told by me what illness I had, they do not know what caused my weight loss, that the reason my hair looks almost exactly the same as before is because what didn’t fall out quit growing, or that the months of chemotherapy could hardly be described as restful. While the inward battle of emotions rages, I try to maintain a benign countenance and politely respond to their well-intentioned comments. Admittedly, I am extremely over-sensitive, but, as with all other things, I hope this too will pass. And one day my hair might grow back long and thick!
As students rushed up to greet me with hugs, I fought the urge to pull back for fear of contracting some illness. For months I have dutifully avoided human contact to prevent infection, so I am still adjusting to the fact that my immune system can now battle disease and I no longer need to take such rigid precautions. I may have to continue to remind myself of this fact over the next few weeks, until it becomes an automatic reaction to enjoy the embrace of others without trying to pull back.
Meeting Up with Friends
While on chemo, I rarely went out for meals because of the risk of infection. If I ventured out, it would normally be to sparsely occupied places where I could maintain a safe space from other diners. Now that I am transitioning from cancer patient to cancer survivor, I can meet up with friends in public without having to estimate if I am far enough away from any diner who might be coughing or sneezing. While I do not find coughing or sneezing pleasant to be around, I am happy that I am able to meet up with friends over a meal to reconnect after these months of virtual isolation during chemo.
Although meeting up with friends is a welcome change, my long-term dietary changes remain in place. So, I remain ever mindful of my menu selections in order to promote continued health. I am not finding the dietary shifts difficult or limiting, but instead find something of a rewarding challenge in selecting something appetizing that is also healthful.
More of Daily Life
As time goes on, driving longer distances, sitting on a crowded beach, and other normal activities will also mark the shift from cancer patient to cancer survivor. But for now I am satisfied to gradually resume quotidian normalcy.
Which of these daily activities do you think you would most enjoy resuming?
1 Hewitt M., et al., eds. From Cancer Patient to Cancer Survivor: Lost in Transition (National Academies Press, 2006).
Since receiving my diagnosis last year and undergoing months of treatment, I am finally regaining a sense of well-being after cancer.
When diagnosed with cancer, life changes in so many ways. A fairly common effect is the loss of a sense of well-being. Gone is the confidence that you are healthy. All of a sudden, a nagging little pain or fleeting discomfort you would have assumed was nothing before cancer becomes a big deal and another thing to talk over with the doctor on the next visit. I imagine the ongoing treatment and risk of side effects or infection contributes to this feeling of needing to keep track of each ache, pain, or anomaly and ask the doctor if it is normal. For months, a doctor wants to know all of those little things, which creates a hyper-focus on how the body is functioning and feeling.
Once treatment ends, that hyper-focus remains, but the ongoing follow up and reassurance of having the knowledgeable doctor regularly tell you your complaints are nothing to worry about is no longer there. Making that shift from being dependent on someone else to tell you that you are okay to analyzing the facts and believing you are healthy is one of the transitions faced at the end of treatment.
Similarly, the possibility of a recurrence can lurk in the mind and cause worry and stress, especially when faced with follow up tests and procedures. Certainly, having faith helps with all of those doubts, but the reality is I was a person of faith when I got cancer. I still had cancer.
So, right now, I find myself in the lull between treatment and the first round of follow up testing to confirm what we believe the chemotherapy accomplished. Almost all the time, I live with a sense of peace and an expectation of a long, healthy life. But, on occasion that lurking thought in the back of my mind rears up and causes a momentary worry that passes quickly. I am grateful for these moments because they are reality checks for me. Yes, the reality is I had cancer and there exists the possibility that it could come back. But also, I have faith in God and in modern medicine and I believe that the treatment I underwent rid me of the disease and will prevent a recurrence.
What does regaining a sense of well-being after cancer and the end of my detour mean for my life? Loads of change for one thing! Life will be different. My body functions differently now. I look at life differently. I have to be more purposeful. For example, a huge focus is what goes in my mouth. Is it good for me and will it help my body function optimally? Another important change has been (nearly) daily exercise that lifts my spirits and gives me time to talk with friends who sometimes accompany me on my walks. I have come to love spending time walking outdoors and the time for reflection that comes with my footfalls on the cement. The elliptical is a nice inclement weather back up, but doesn’t allow for reflection in the same way.
But, most importantly, I have learned to focus on people and not just tasks. Being a goal-oriented person, I have spent years working toward this or that end, and have enjoyed the challenges. However, over the past months, I have enjoyed the time for conversations with old and new friends. Connecting or reconnecting with friends has made me feel more fulfilled than spending long hours at work or trying to meet some goal I had set for myself. Don’t get me wrong, I will still strive to be an exceptional teacher, but I also want to live with balance so that I can also continue to be a good friend.
And regaining a sense of well-being after cancer means the lurking thought in the back of my mind that someday cancer might come back only makes me realize I have a limited number of days allotted to me and I need to make each day count.
During the past few weeks, I have been trying to find the new normal after chemotherapy. Although I am thrilled to be finished with ongoing treatments, I am not yet back to normal activities. With enthusiasm, I have increased and broadened my activities, while still maintaining precautions against exposure to illness or overtaxing myself.
Fatigue and Lagging Stamina
However, I have found my stamina has eroded over the past few months and if I become too ambitious, I need a couple of hours of sleep in the afternoon. It has been surprising how fatigue creeps into my daily schedule. Other cancer survivors have told me that I might need naps for a long time, but I have high hopes for a speedy recovery. Nevertheless, as I face the reality of going back to work and getting on with life, I wonder what unexpected physical limitations might crop up.
In Limbo
These few weeks between the end of treatment and being released to return to work and daily normal activities have become rather like living in limbo. My chemo treatment schedule no longer rules my calendar, giving me much more freedom to fill my days with other things. However, since I have not yet been released back to my regular activities, it has become a balancing act to try to find productive activities that allow me to regain a sense of normalcy in life while still protecting me from infection and fatigue.
Catching up on regular medical exams and dental care has filled some of the time, but I find cabin fever to be increasing as time marches on. Still, the dilemma of what I can do depends largely upon my energy level and whether or not an activity will expose me unduly to possible illness. For example, I used to drive myself to visit family or on road trips without a second thought. Now because fatigue sets in, I do not venture very far when driving myself, but instead depend upon the kindness of others to transport me here and there. It has been a limiting lifestyle adjustment that I hope will be short-lived as my energy level and stamina improve.
Lingering Side Effects
May 2016
Many of the side effects from chemotherapy have abated over time. Happily, my hair has begun to grow back again, filling in the balding spots I worked to cover during chemo. Still, a couple other side effects are lingering longer than I would like. While I still hope that they will go away eventually, and I realize it is early days yet, only time will tell if they remain or not. Chemotherapy Induced Peripheral Neuropathy (CIPN) is one side effect that continues to plague me. At times it seems less bothersome than others, but often in the evening, it seems to intensify and feels as unpleasant as ever. In my next appointment with the oncologist, I will ask him about trying some of the remedies others have suggested, in addition to the vitamins recommended. So, I am waiting to see what the new normal for these side effects will be.
Living Strong, Living Well
To help regain strength and stamina, I have registered for Living Strong, Living Well, a twelve week program sponsored by Stanford University that is designed specifically to help recovering cancer patients once they have finished treatment. Although I have rarely been a regular at the gym, I look forward to starting this program in a couple of weeks at a nearby YMCA and hope to see noticeable improvement quickly. I want the new normal to feature a strong me.
Relationships
Finding the new normal after chemotherapy in relationships is an ongoing process. Many have walked through this detour with me, enabling a new normal to develop in the process. We have already identified and adjusted to subtle and not so subtle changes that emerged during my cancer detour.
However, for those at work or others who were otherwise distanced, I will have to find ways to reconnect with them and to move forward without having to relive and recount every detail of the detour. Establishing boundaries will help me to resume normally activities and pick up relationships that have been on pause, while maintaining balance and perspective, as well as keeping me from constantly reliving the ups and downs of chemotherapy.
How to form new relationships authentically as a cancer survivor will also be part of finding the new normal. The cancer detour is part of my story and has shaped who I have become. How my experience impacts the development of new relationships will be part of finding the new normal after chemotherapy. I look forward to the adventure!
Resources
Thankfully, in addition to family and friends who have supported me throughout the cancer detour, there are many resources available to help in finding the new normal after chemotherapy. Both the American Cancer Society and National Cancer Institute offer online resources to support patients making the transition from active treatment to normal life. And, the Silicon Valley is replete with resources, such as the Living Strong, Living Well program and plentiful Survivor Support Groups available through different agencies and non-profits, like Cancer CAREpoint.
Undoubtedly, there will be unexpected challenges as I am finding the new normal after chemotherapy, but I look forward to facing each challenge with faith and hope.
Thank you for your continued love, prayers, and support as I wrap up this cancer detour!
What is The American Cancer Society Relay for Life? I had heard something about it, I had never really given it much thought. However, after being diagnosed with cancer last summer, The American Cancer Society has provided me invaluable education and resources to help me navigate my cancer detour. I am infinitely grateful for their support of cancer research, education, and community awareness programs.
This year as a celebration of finishing chemotherapy and returning to a strong state of health, members of my family, friends, and colleagues have committed to walking with me in Relay for Life of Saratoga. If you would be willing to donate or to walk with us, I hope you will visit my page and support Team Chel! in this event.
During the past few months, I have written about the many ways my family and friends have shown their love and care for me, which I have come to think of as writing on the heart. By how we respond to others, we leave little notes written on their heart. These etchings can be bitter or sweet memories. It all depends upon us and how we make them feel. In recent findings by psychologists John and Julie Gottman, relationships that succeed over time have two things in common: kindness and generosity. The partners in these relationships respond positively to bids, or requests, to pay attention to things they are interested in and that is like writing on the heart with positive words of affirmation and love.
Recently, I was in a situation and I needed to reach out for help. Although I used to think of myself as quite the independent person and tried to do things on my own, I have found that I need people a lot more than I thought. In this situation, my help came from a source I hadn’t thought to reach out to at first. I hated to impose, but I really needed someone’s help. It was a relief when the person said sure and stayed with me until the problem was resolved. It was reassuring to know I wasn’t alone and that someone with more knowledge about something was there to advise and support in that moment of need. That person was writing on the heart, my heart, and saying you matter. I care. I am your friend.
Last year I faced another situation I could not resolve on my own. One of the hazards of teaching primary grades is that sometimes they pass on runny noses, upset stomachs, or little critters from their head to yours. In all my years of teaching, I had never had the latter happen until last year. As I sat on the couch one evening as it neared bedtime, I felt the eerie sensation of something crawling on my head. I reached up and pulled a live louse out of my hair. Since I live alone, there is no way I could have given myself lice, but I also knew there was no way I could rid myself of them. So, just when I should have been settling down to sleep, I was calling Julie, a teacher friend of mine, and asking if she would help me. Without hesitation, Julie went to the all night pharmacy, got the necessary shampoo and comb, and came over to remove the remaining lice and nits out of my hair until about 1 o’clock in the morning. It was gruesome and wholly unpleasant, but Julie did it because she is my friend. She was writing on the heart, my heart, and saying you matter. I care. I am your friend.
This week, I lost a fellow on the cancer journey: Geraldine Sims. Although she was fighting an arduous battle herself, she took time to reach out to me with encouragement and kindness. She prayed for my recovery, even when faced with the reality of her own failing health. She challenged me to have greater faith, even when things looked bleak, and to love and encourage others in spite of my own suffering. Her example of loving support was writing on the heart, my heart, and saying you matter. I care. I am your friend and sister in Christ.
I could tell you story after story about how people over the past few months have been writing on my heart with words of encouragement or acts of kindness. How I wish I could share about each person who sent a card or package that arrived at just the exact moment to encourage me when it was most needed. Or, the hug coming just at a moment I felt weak and hopeless, and the warmth of love stuck me back together and renewed my strength to go on. Each person was writing on my heart, making it stronger, making it more loving, making me a little different person through their love and affirmation.
So, I have been thinking about myself and what I might be writing on the heart of each friend or family member. I want to be purposeful and not reactive. I want each message to be positive, not negative. I don’t want to write I am too busy. I don’t have time. You are unimportant. Something or someone else is more compelling than you right now.
Instead, I want to be writing something positive like the friends I mentioned here: You matter. I care. I am your friend and I am here for you–anytime, always, no matter what.
How about you? Has someone been writing words of love and affirmation on your heart lately? I hope so!
A few weeks ago, I began dreaming of life after chemotherapy and suddenly here I am. Chemotherapy is over! As I am looking back on chemotherapy, which has dominated the past few months of my life, I feel overwhelmingly grateful.
Looking Back on Chemotherapy with Gratitude to God
First, I am grateful to God that I had multiple symptoms that enabled my doctors to detect the cancer at an early stage. Often, people have no symptoms until later stages when cancer is more widespread and difficult to treat. The cancer I had was found when it was still self-contained in one region of my body and had not spread to lymph nodes, blood, or bones. This gives me a positive outlook for continued health, for which I am infinitely grateful.
God was also very near during my darkest moments. He listened when I talked only to Him about the pain, uncertainty, and fear that came with the diagnosis, deepening my faith and trust in Him. He heard me when I cried alone in the night and brought me peace and comfort. God gave me time and provided the kind of support I needed to process having cancer and being on chemo. He has given me renewed purpose and hope for a bright outlook for my future. God has taught me to “live to live” and I am grateful.
Looking Back on Chemotherapy with Gratitude to the VMOC Staff
Asleep in Chemo Chair on Infusion Day
I am also grateful for a kind, compassionate staff that cared for me during my treatment. From my first visit to the oncology practice where I received chemotherapy treatments, I received kindness and compassion from all of the staff members. Beginning at the receptionist’s desk when I walked in, to the schedulers’ desk as I left, each person made me feel like I mattered because they cared.
My now familiar name and face are readily recognized by everyone. Each person dealt kindly with me and made allowances for my emotional moments, even the negative ones. They showed sympathy and understanding when I didn’t even understand my own emotions. Their kindness and compassion created a safe place for me during treatment–so safe that I could sleep soundly for part of infusion day.
On Tuesday when I finished my last chemo infusion, I walked out of the chemo infusion room with a warm hug from one of the oncology nurses and a celebratory certificate of completion signed by all of the staff. They gathered around the scheduling desk to cheer me on and wish me well. Although it may sound silly and inane, I nearly broke out into tears. Their gesture of support and recognition was so touching and their well wishes were utterly heartfelt. They overwhelmed me with their compassion. As I am looking back on chemotherapy, I am grateful that such a kind, compassionate staff cared for me on the cancer detour.
Looking Back on Chemotherapy with Gratitude to My Family
When I was diagnosed with cancer last August, my family hastened to surround me physically, demonstrating their love and concern. They were with me in the hospital and have continued to surround me in so many special and felt ways. I have seen over and over how blessed I am to have such a loving, supportive family.
My mom came for almost every round of chemo. Only when she was sick did she stay away. Even though the long trip was difficult and so was dealing with an often cranky and emotional chemo patient, she still came willingly with a helping hand. She ran errands, cooked healthy meals from new, unfamiliar recipes, and slept in a bed made of her own fears and sadness about me having cancer. She didn’t burden me with her struggle over my health, but instead worked to lift me up and help along the way. Her hugs made life easier and helped me to remember we would make it through this together.
Dad, Mom, my sisters, aunts, uncles, cousins nieces and nephews showered me with their love in so many ways it would take an extremely long post to list all the special things they have done to show they cared for me. My sisters all picked up the phone when I called, helped me grapple with difficult issues, and loved me in the process. Each one gave me something useful and precious to help me through these challenging months: heavy duty work gloves to use when I grabbed something out of the refrigerator or freezer, comfy slippers, delicious triple ginger cookies to help with my persistent nausea, and packages in the mail with special seasonal treats.
As I am looking back on chemotherapy, I am grateful to my family for helping to give me strength to keep fighting.
Looking Back on Chemotherapy with Gratitude to My Friends Both Near and Around the World
If you’re reading this post, then I am grateful to you. Like my family, friends old and new, near and far have surrounded me with their love.
Even if I have mentioned before the dear friends who went to the store to pick up needed items for me, sent me cards and packages in the mail to encourage me, took me to chemo, took me to the hospital, once even in a borrowed Tesla Model S, drove me to or from procedures, called to remind me I was loved and prayed for, Skyped or talked via Facebook Messenger to remind me I belonged and I mattered, posted encouraging comments on my blog, Facebook page, or CaringBridge site or otherwise let me know you were praying and wishing me well, it bears mentioning once again. You were a tremendous blessing to me and I thank you!
All of you have helped me realize how rich my life is with you in it and just how blessed I am to have such an amazing network of people who care for and support me. You have made this detour less lonely and forsaken. As I am looking back on chemotherapy, I am infinitely grateful to you for accompanying me so lovingly and constantly.
Looking Back on Chemotherapy and Looking Forward with Gratitude
Last day of chemo with my 20 lb. chemo bag
Now as I am both looking back on chemotherapy and beginning to look forward to life after chemotherapy, I know I will undergo more tests and procedures to make sure I remain healthy, but I am confident that everything will be fine. And, I know that no matter where my continued journey of life takes me, even if another detour pops up somewhere down the road, I will be well accompanied.
Thank you for being in my life and for showing me how rich I am!
Nausea and Chemo Induced Peripheral Neuropathy (CIPN) have been garnering more of my attention than the cold sensitivity and other chemo side effects I mentioned in earlier posts. Lately, nausea has resurfaced and CIPN has become more bothersome. Although nausea has been more of a constant companion than CIPN throughout most of my chemotherapy treatments, and even though CIPN is essentially a latecomer, its long lasting effects can be more pernicious and bothersome.
Maybe you have never heard of Chemo Induced Peripheral Neuropathy, but it is nerve damage that creates numbness or tingling, unrelated to the sensitivity to cold, in the extremities. According to my oncologist, CIPN may continue spreading up my fingers and toes, and unfortunately, could even become permanent. For about 15% of patients, it never goes away. Part of deciding whether or not to continue chemotherapy depends upon the progress of neuropathy from one chemo cycle to the next.
For me, CIPN began in my feet and has been spreading up toward my shins. Most recently, I have been sensing it in my fingertips, which has required some extra care when chopping vegetables! I guess if it lasts for a year after chemo, then it is likely to become permanent. I would prefer for that not be the case.
I love playing the piano and, as you can tell, I love to write. I also enjoy walking for exercise and enjoyment. It would be disappointing if the unpleasantness of Chemo Induced Peripheral Neuropathy persisted and diminished my enjoyment of these favorite pastimes. So, I take the Vitamin Bs recommended by the doctor and try to stay active, hoping that by using these tingly fingers and toes, I can ward off the worst of it. Although only time will tell, I am hoping and praying for the best!
The ups and downs of chemotherapy can be challenging at times. Chemotherapy affects people physically, emotionally, and mentally.
The Physical Ups and Downs of Chemotherapy
Most obvious to the outside observer are the visible physical changes, which may include weight changes, hair fallout, discoloration of skin, sensitivity to cold, neuropathy, nausea, fatigue, inability to sleep, just to name a few. From the outside these are easily observable and people sometimes comment or ask questions about these changes.
The side effects definitely result in ups and downs because they are the most basic daily challenges. Nothing else can be processed or dealt with while in the throes of nausea or sleeplessness. The priority becomes survival and finding ways to mitigate these physical effects of treatment.
Yesterday when I went to have my chemo pump disconnected at the end of my treatment, I wore a beanie because showering is more of a challenge with the pump than I can master. So, my hair was somewhat of a mess that was best covered up. It was also chilly outside, so the beanie served dual purposes. Someone who has seen me on a regular basis over the past five months asked me if I had all my hair tucked up in the beanie or if the hair she usually saw me with was mine or a wig. Thankfully, it was a good day and I found her query humorous.
The Emotional Ups and Downs of Chemotherapy
But, there are days when that would have been more that enough to send me into an emotional tailspin. My hair loss has been one of the more difficult side effects of chemo to accept. But at different times, all of the side effects have taken some emotional toll and required time to come to terms with them.
With so many foreign substances coursing through my veins, maintaining an emotional even keel has been a challenge. Out of the blue, something insignificant can seem like the end of the world and result in a major meltdown. It isn’t always predictable and it definitely hasn’t been pretty.
Then, there is the constant adjusting to having been a cancer patient. Until Monday, I had no longer called myself a cancer patient because the follow up tests after surgery showed no active disease. Instead, I was calling myself a chemo patient. Somehow, that made me feel better. It was almost like I already beat cancer even though I am still in treatment. But, inevitably another bend in the detour sends me back to square one.
For example when I started chemo cycle ten, my oncologist warned me that 80% of patients made it to cycle ten, but not beyond. My platelets and white blood cell count were both on the low end of the normal range, so I interpreted my oncologist’s ominous words as preparation for calling an end to chemo after that round. I didn’t expect my platelets and white blood cell count to rebound so effectively. You may imagine, then, my dismay when he said chemo was on for cycle 11 this week. Although I know it is the best possible scenario to finish all 12 chemo cycles, I wasn’t emotionally ready for another round.
In fact, I had already begun to think of what life might be like after chemo. I began dreaming of a future filled with hope and possibility. As I sat in the consult room with the oncologist telling me we were proceeding with chemo, suddenly I was a cancer patient again. All the gloom and doubt surrounded me, effectively erasing my hopeful plans for the future. Once again, I was the woman with the big black C hanging over her head. There was nothing I could do about it, but cry.
I wish I could tell you I was always emotionally strong and that I never had doubts, but that is not the case. There are times when my past rises up and robs me of my hope for the future. I suppose we all have things in our lives that do this, but for me, this has become the greatest emotional challenge of having cancer.
The Mental Ups and Downs of Chemotherapy
Chemo brain is real. There are times I find myself grasping for words or wondering how to explain things. My ability to process and retain information is not as strong as it was before starting chemo. Unlike other patients, however, I am not completely fogged in, but I still find myself noticing little lapses and inaccuracies that were not part of who I was before. After chemo is over, some of this will probably self-correct, but some of it may linger for awhile.
The good news is I have wise people I can sound ideas off of and who can help me think things through. Laughter can also help minimize the sting of these little inconsistencies. And hopefully, little by little, maybe I will think more like myself than I do right now. At least one can hope!
I find myself wondering who and what I will be when this is all over. I suppose only time will tell. But, whatever happens, I am hoping to be audacious and awesome!
15 Chemotherapy Skills That Will Never Go on My Résumé
When I was first diagnosed with cancer, I began learning all I could about the disease, what it meant for my life, and how I could help in the process of returning to full health. This began my accumulation of 15 chemotherapy skills that will never go on my résumé. At first, I scoured the internet, especially sites like The American Cancer Society, The Mayo Clinic, Livestrong, The National Institute of Health National Cancer Institute, and even found helpful articles on Pinterest. During meetings, appointments, and phone conversations, I began taking copious notes in a dedicated cancer notebook on what was said by the surgeon, the physician assistant, the oncology nurse who facilitates a support group, the R.N. who serves as case manager through my health insurance, the social worker at Cancer CAREpoint, billing departments, health insurance customer service representatives, my pastor, or my knowledgeable and experienced oncologist . The ability to learn and implement my new knowledge has become an important skill to returning to complete health.
Through it all, I have gained more information than I ever thought I would need about health, the human body, and cancer. This has often been gained with my own body the subject, which has forced me to develop skills for discussing delicate or personal subjects with decorum, while being perfectly candid. Sidestepping important issues can be detrimental to health–my health, and that simply isn’t an option for me. My quest to return to complete health has led me into situations that have taught me other skills.
Other Chemotherapy Skills That Will Never Go on My Résumé
Being able to clamp or unclamp an IV line becomes critical if the pump malfunctions. Stopping the flow of the medication or checking to see if a line was inadvertently clamped is pretty helpful to know in case of other emergencies, too. Unfortunately, I learned by firsthand experience that pumps do malfunction. Which brings me to my next newly acquired skill.
Troubleshooting a chemotherapy pump while on the phone with a customer service representative can be a challenge. The pump is set by the nurses in the oncology practice to deliver chemotherapy at a certain rate. While the nurses have access to wide function of the pump, patients can only stop or restart the pump. That way, delivery of the chemotherapy cannot be tweaked by accidental pushing of buttons while the patient is at home sleeping or doing other everyday tasks. While I do not know about all chemo regimens, I know there is a specific rate at which my chemotherapy drugs are administered and it is unwise to mess with it. Therefore, the button blocking function is a fantastic thing.
That is until your pump starts repeatedly alarming at 9 o’clock at night and you have to call the pump company’s customer service line to resolve the issue. Then, they tell you how to sidestep the button blocking function to get some relief from the sleep robbing noise of the pump. Of course, they also make sure the button blocking feature is reactivated before letting you off of the phone. As you may know from personal experience, talking technology in the wee small hours with someone who knows an infinite amount of information about the technology in question can be somewhat of an exercise in careful listening and following directions. We still couldn’t solve the problem, but we tried.
Being frank with my oncologist about which chemotherapy infusion room I prefer. Infusion day is several hours long, so the atmosphere of the room can impact the level of patient comfort. As a reflective introvert, I found the larger infusion room just inside the practice door and across from the scheduling station to be noisy and lacking privacy because every single patient walks by the door on the way to an examining room. And, the discussions around the schedulers’ desk are sometimes often, but almost always audible in the larger room. So, voicing my preference for the room in the back, which is smaller and literally the last door accessible in the practice, became necessary. Nobody passes the room going anywhere else in the office. People literally have to purposefully walk to that room. As a result, little outside noise filters in.
Packing a chemo bag has become a time-consuming art. Over time, my enormous bag has come to contain all manner of helpful items such as those mentioned in my earlier post What Should Go in My Chemo Bag. Finding and packing healthful but nausea proof snacks to munch while passing four to five hours in the chemotherapy infusion room can be challenging, but oh so crucial to a good chemo day.
Weirdly Humorous Chemotherapy Skills That Will Never Go on My Résumé
Describing bodily functions with a straight face has become a regular exercise within the confines of the surgeon’s or oncologist’s examining rooms. No topic is taboo and no question is exempt from being answered.
Putting Emla Cream over my port site on infusion day without getting it on my clothes before covering it with Press’n Seal or numbing my fingers in the process has become one of my greatest accomplishments. One day I forgot to put on the Emla Cream at home before heading to chemo and of course that was the day the oncology nurse used the wrong length needle and had to stick my chest twice before being able to set up my infusion. I have not forgotten the cream again and I could probably guarantee that I never will. It was not fun. Not fun at all.
Who knew that exposing my mediport site in preparation for an infusion in a well-populated infusion room without modesty curtains would eventually become a matter of fact and devoid of undue mortification? There still may be a bit on occasion, but somehow I have learned it can be borne. Those of you who were breastfeeding mothers had an advantage over me, but I now consider myself quite experienced. My question to all of you experienced mothers is if the previous state of modesty ever comes back because I am finding it a bit harder to remember what the big deal was.
Wearing a chemotherapy pump as a fanny pack without feeling like I am suffering fashion suicide didn’t take long at all. As a matter of fact, it only took one time knocking the pump on the floor with the IV tubing yanking on the bandage covering the inch long needle connected to the mediport site in my shoulder before I decided to go the fanny pack route. I would choose painlessness over fashion faux pas any day!
Discerning if my oncologist is being serious or humorous. He is such a kind and knowledgeable doctor that I trust him implicitly to tell me the truth according to current medical research. We are both so serious about cancer and me getting well that honestly, I had to ask him to smile when he joked so I would know he was kidding. Now, I am perfectly clear about when he is joking–and it wasn’t as often as I previously thought!
Using the restroom while the mediport is connected to medications hanging on an IV pole without getting turned around, tangled up, or tripping on the tubes or IV pump power cable can be tricky at first. My chemotherapy is given in liquid form, so after an hour or two of liquids seeping into the body, it becomes necessary to use the necessary. Trips to the restroom as a chemo newcomer became lessons in problem solving and Houdini worthy escape acts. After awhile, I learned to dance with the pole, making sure it mostly stayed on my left side and if I had to switch sides how to do so without tangling everything up around me. The importance of keeping the lines and cables securely fastened also became clear rather quickly.
Patient to Patient Chemotherapy Skills That Will Never Go on My Résumé
Learning when to be a quiet listener and when to share what has helped me. No two people experience the same stress with a cancer diagnosis or impact of cancer on their lives. Each detour is different because each patient is unique and the disease attacking their healthy cells is unique to them. So, sometimes listening and validating the fear and frustration is just as important as later sharing that according to recent medical research, using a baking soda rinse is the most effective way of dealing with treatment related mouth sores .
Having empathy during a phone conversationwith someone who is vomiting on the other end without getting sick myself.
Sharing frustrations and then moving beyond. We all have frustrations, stress, or doubts and with an ongoing health condition sometimes they can mount up. It is helpful to have friends who recognize and acknowledge those feelings without letting you send out invitations to a pity party. Just hearing someone else say they have gone through the same thing basically neutralizes the temptation to linger in those low places we can all walk into at times.
Being a friend to someone who is wrestling with metastatic disease is the skill I probably least desired to gain. I wish all of the patients I have met would successfully defeat this horrible disease. In the past, I felt so helpless and inadequate to condole with the suffering. Instead of avoiding them, I find myself drawn to their faith, hope, strength and tenacity to live. They challenge me to “live to live and not live to die” because I see them using everything within them to do exactly that: to live.
One friend in particular has challenged me by her unwavering faith in God. She has inspired and encouraged me when we know that for her, cancer will become her ultimate journey, while for me it is simply a detour. Her implicit faith in God’s goodness and faithfulness carries her through the bad days, and a phone conversation with a listening friend can help a little, too. It doesn’t solve our cancer woes, but somehow it resolves quite a lot of life’s issues. And that makes living truly wonderful!
Chemotherapy Skills That Will Never Go on My Résumé
These 15 chemotherapy skills that will never go on my résumé , but that have become crucial in my life may never help me gain a better salary or a less stressful job. However, they have become part of who I am and how I go about life. In different ways, these skills will stick with me and help me be a better daughter, sister, aunt, friend, colleague, and who knows what else. I look forward to the journey of finding out!
