Paying off medical bills was practically the last thing on my mind when I was hospitalized prior to my cancer diagnosis last summer. I did what I could to make sure the hospital was getting pre-authorization from the insurance. However, the reality is that I was too sick and weak to really think about much more than the blood transfusions and diagnostic testing I desperately needed. The doctor who arranged the hospital admission assured me that no insurance company would deny the medical necessity of my hospitalization, but he didn’t warn me attending physicians and other medical providers were essentially independent contractors, rather than hospital employees, who may or may not be part of my Preferred Provider Network.
Appeals and Discounts
I learned the hard way about this reality. Unbeknownst to me, the group of doctors who served as attending physicians in the hospital were not part of my PPO, which meant that not only was the bill paid at only 60% by the insurance, but there was an additional $250 out of network deductible. These surprising charges forced me into another unknown realm: appeals to the insurance company and requests for discounts directly from out-of-network medical providers. Although the insurance company rejected my appeal for in-network level coverage, my requests directly to the out of network medical providers proved much more successful. Both of the providers I contacted wrote off part of the total and the billing department for the attending physicians also offered to put me on a monthly payment plan because of the size of the bill. I am pleased to say, I finally paid off that balance last month!
Paying Off Medical Bills: Miraculous Provision
While I was on medical leave for chemotherapy, the San Jose Teachers Association (SJTA) granted me sick leave through their Catastrophic Leave Bank. Essentially, sick leave donated by members of SJTA carried me through all but eight days of my medical leave. Because teachers in California do not pay Social Security Disability benefit Insurance, we cannot receive those benefits. Consequently, the provision of these days from the Catastrophic Leave Bank averted what otherwise could have quickly become financial catastrophe.
Unexpected generosity also came from long-time family friends, who with their personal insight into the overwhelming challenge of paying off medical bills, chose to help me pay off those bills. Their benevolence came just as I was facing the month with those eight days of unpaid leave, which was literally just in the nick of time. I was completely overwhelmed to be the recipient of their philanthropy.
Thankfully, I can see the end of my medical bills within the next couple of months. I am grateful for those who have helped me financially, for the medical insurance that covers the majority of my costs, for the job that enables me to continue meeting my financial commitments, and for a summer school teaching job helping me recover financially from the burden of months of medical bills.
The lingering effects of Chemo, such as chemo induced peripheral neuropathy and fatigue, continue to play a part in everyday life. Experts tell me both can take up to a year to resolve, and in the case of fatigue, sometimes even longer. However, life goes on and I am finding ways to cope, although not without being sometimes caught off guard.
Lingering Effects of Chemo: Neuropathy
Lately, I have noticed the neuropathy I experienced in my fingers and feet has been less and less noticeable. At first, it seemed as though it would improve for a few days and then would seem as uncomfortable as ever. However, most recently I have been feeling it just slightly in my hands, although more pronouncedly in my feet. I am relieved and happy this sensation seems to be dissipating and hope soon it will be completely gone!
Lingering Effects of Chemo: Fatigue
Life is busy. There are many things to do to keep house and work. My list of things to do seems endless. I try to do things in chunks and to make the most of the energy I have, but I still sometimes find myself surprised when I come home from a grocery shopping outing and feel the need for a nap. Fatigue makes keeping up on household chores a challenge, so I have adjusted my expectation for what I can get done and have tried to organize things so that I have clean clothes for work and food to throw together for meals. But, beyond that, I simply have had to relax and let my best be okay for now. This is not forever, so I trust that before long, it won’t be such a chore to keep up on chores and the upkeep of housework will feel a little less overwhelming.
Lingering Effects of Chemo: Stunted Hair Growth
Happily, I have short hair sticking up on the top of my head where some new growth has begun to crop up. Although I have begun to see some hair growth in places, there are other places that remain oddly hairless. I do not know if I can expect this to continue long-term or if it just needs some more time to begin to show up.
Lingering Effects of Chemo: Sunburn
Earlier this week, I had the pure joy of taking a nap near the Pacific Ocean. A lovely pair of palm trees provided shade for my afternoon slumber, but since the breeze was somewhat cool, most of my body, including my arms and face, were fully covered, except for my legs and ankles below the capris I was wearing. Time stands still for no one, so upon waking, I found I was in full sun.
Since the breeze was refreshing I did not notice the heat and thought nothing more of it until later that evening when my ankle began to itch. Only then did I realize the bright redness on both of my legs where they had been carelessly exposed to the afternoon sun. My oncologist insisted I take care to avoid the sun while I was on chemotherapy, but after I finished chemo, I began to spend more time out of doors at various times of the day. Although I had only been exposed to the sun for about 20 minutes that afternoon, I suffered for days from the pain of this sunburn.
Hopefully, the chemo effect will soon be completely out of my system, but until then, there will be no more carefree siestas in the afternoon sun without being fully covered to protect myself from the sun.
When I was finishing up chemo, I decided I wanted to do positive things to establish a healthy lifestyle as a person who had moved past cancer treatment. All through chemo I worked to maintain a healthy, balanced diet and regular exercise routine. After treatment, I wanted to keep up these positive changes, but I also wanted to do something to mark the transition from being a patient to thriving in post treatment life.
One of the ways I found to do this was by signing up for a local American Cancer Society Relay for Life fundraiser. So, I signed up as a team captain and began recruiting people to be on my team. With just two weeks until Relay for Life of Saratoga, my team remains small. But, I am happy for those who have chosen to join me and to mark my transition back to life as I once knew it. I am grateful for their support and look forward to a fun-filled time.
Just today, I became a Hero of Hope speaker and will share at the Luminaria Ceremony during the Relay event. If you find yourself in the San Jose area and have time to come by St. Andrews Field at 13601 Saratoga Avenue, Saratoga, CA on July 23, 2016 between about 8:30 or 9:00 p.m., I will be sharing some thoughts on life from a cancer survivor’s perspective.
Other Lingering Effects of Chemo
There are other effects of chemo that remain with me. In addition to peculiar physical side effects, I have a new perspective and a more grateful attitude. While I find myself frustrated that I have not been able to keep up contact with friends as I did while on chemo, I still find myself thinking about them and am grateful for their ongoing support and presence in my life. I feel amazingly blessed to have so many people in my life who care about me and are willing to walk along what has been a difficult path this past year. Although I do not know what the future holds, I am expecting wonderful things because I know I will continue to be surrounded by the best group of people who will accompany me no matter what comes my way!
As we head into July, I am mindful of the first anniversaries of the cancer detour and thankful to be healthy. In fact on July 5 last year, I first began to have notable symptoms of the undetected illness within. Although I had slept through the summer into July, it had not occurred to me that I might be ill. But when July dawned, it became more difficult to dismiss the symptoms I was experiencing. However, for about a month I had no suspicion of anything worse than the stress of traveling. Thankfully, a knowledgeable doctor connected the scattershot of dots I described and ordered the right blood work to begin the diagnostic process that revealed the tumor growing within. For that, I am eternally grateful.
Thankful
In fact, I am thankful for so many things. Every day as I maneuver my way through commute to traffic on the drive to summer school, I thank God for this job. Although I have to get up before 5:30 on these summer mornings, I am grateful to be working for such a great district and to be meeting different teachers, with varied experience and background, from whom I can learn. I am thankful for the students in my class who are eager to learn and easy to teach. During these few weeks, I am implementing teaching strategies I was trained in two years ago, but haven’t had the need to try out yet. Realizing that I can use these techniques successfully to impact student learning gives me another reason to be grateful.
Along with teaching summer school, I am thankful for the Living Strong, Living Well program. Up until now, I have not loved going to the gym. I always felt out of place because I didn’t know what to do and have a terrible time trying to follow the complicated choreography of some exercise classes. Although I may enjoy that kind of exercise, I often find myself zigging when the rest of the class is zagging. It makes for a highly stressful experience that counteracts the positive feelings generated by the endorphins released through the exercise. So, I am thankful for Ron and Trish, the YMCA trainers, who partner with Stanford to offer Living Strong, Living Well that are teaching me to use machines for cardio exercise and also for weightlifting. Their kindness and patience encourage me to do my best and to use the machines correctly, while not overdoing the weight. These trainers and the other participants in the program give me yet another reason to be thankful.
Two months post chemo and still surprised by fatigue and things that trigger emotions. Even though I have resumed normal activities and am going about life as usual. I have been keeping a pretty steady pace and for the most part have been fine. After going back to work, I had some challenges readjusting to being back in a world that looked the same, but had changed. But, I made it and was glad I had gone back for the end of the year.
Now with school out, I have been filling my days with travel, packing up my classroom to move schools, transporting things to the new school site or to be stored, reconnecting with friends, and exercise. I have been feeling good and enjoying this new phase of life. However, I quickly forget that just over two months ago, I was a chemo patient.
My fatigue doesn’t seem to grip me constantly, so I can keep a pretty full schedule for awhile. Then suddenly, I find myself unable to deal with the emotions that accompany the normal stresses in life and realize I am tired and in need of a nap or a long night of sleep. The good news is that it is exactly that simple, so why can’t I remember this simple fact?
Triggers
A cancer diagnosis comes with an element of fear that takes time to overcome. Occasionally, that fear pops up out of the blue, but more often I find that it is triggered by treatment related issues or circumstances. For example, this week I had to schedule follow up testing for the end of the year. Both of the procedures I had to put on the calendar were tests I had in the hospital when the cancer was diagnosed. Naturally, scheduling those tests triggered feelings similar to those I felt the first time I had them since they caused me to remember and relive, at least on some level, the emotions around my diagnosis. However, if I had been more rested, I think I would have faced them more quickly and put them to rest without having to weather such a tempest in a teapot.
Anniversaries
And, the anniversaries are looming larger on my calendar. The anniversary of feeling sick, learning I was ill (on my birthday, no less!) yet not knowing the cause, then being told I had cancer one day and having surgery to remove the tumor the next. I anticipate a certain amount of emotion as these dates approach, but I know that they will pass and I will be fine. They are just dates.
Recurrence
Recently I had the chance to share with someone who asked me if I feared a recurrence that I do not expect the cancer to return. I am striving to live my life to the fullest, while doing everything I can to live a healthy, anti-cancer life. But, it could still come back. I couldn’t prevent cancer the first time, so I know I can’t prevent it from coming back, either. What I can do is make the most of my life. Do what is important and let go of the small, insignificant things that pop up that really do not matter, but can quickly steal my joy, time, and attention, if I let them. I am doing my best to not let them! It is easier said than done, but I am finding the effort worthwhile.
Why Am I Surprised?
While I do not know the answer to why I am surprised by fatigue and the impact fatigue has on my emotions, I do know I am planning to make rest a priority and to find ways to remind myself that it will take time, more than I realize, to regain my stamina for the everyday pace of life. Taking a nap or sleeping an unusual number of hours some nights is exactly what I need in order to keep up with my day in and out activities. Hopefully, this will begin to come naturally and I will not reach the point that I am stressed and emotional over insignificant things.
Any suggestions for other ways I can be mindful of pacing myself and getting enough rest?
Going back to work after chemo has turned out to be challenging in ways that I had not anticipated. Consequently, this week’s post will be comparatively short.
School
Returning to work was going to be hard physically, I thought. This first week back, I had a commitment every evening after work, so I anticipated being fatigued. Little did I know I was wholly unprepared to deal with the dissonance of reintegrating into teaching at my school, an entity I thought I knew intimately, but which has continued to develop and evolve while I was cocooned for chemo. While I was on leave from work, I thought about how the people at work were not part of the cancer detour, but I failed to realize that I wasn’t part of those months in their lives or the school community, either. I am back seeing familiar things and faces, but I expected everything to be the same and for me to fit right back in. However, since I didn’t live through events with the rest of the staff or experience the ongoing metamorphosis of the school, I have realized that I am out of sync. Once familiar things have changed and catch me off guard. And, sometimes, my absence has been forgotten about by others and I find I don’t know what is going on for lack of information. For me, this has resulted in an emotional first few days back at work.
Although dealing with the machinery of the school has been a challenge, being back with my students for the last part of the year has been pure joy. The students have adjusted nicely to having me back and are happily requesting to sing songs throughout the day and play games during physical education that I taught them in the few short weeks I worked early in the school year. In spite of my absence, they have had a good year. For this, I am thankful. And, the opportunity to have closure with them is a blessing. In fact, next year I will be assigned to a different school in the same school district, so I am taking advantage of these last few days of school to say goodbye to staff and students alike. I have loved reconnecting with former students and been glad for the chance to tell them goodbye.
Living Strong, Living Well
Twice a week the Living Strong, Living Well program has given me an way to decompress and de-stress after work through physical exercise. And, while I notice my emotions lifting after exercising at the YMCA, I also know that aerobic exercise and strength training correlate with a lower recurrence of cancer. So, I am pleased to have a dual benefit from my workouts and hope to be able to continue once the program ends.
Furthermore, I have found comfort in working with this group of survivors as we commiserate or laugh about side effects, while focusing on becoming stronger and healthier. Following orientation day, all participants seemed to be looking forward and no longer defined by the disease that gripped us. A sense of anticipation of better things ahead and an easy camaraderie has developed, both of which inspire me to do my best and be a cheerleader for other participants.
Life is Good
Although I have faced unexpected challenges going back to work after chemo, I am happy and grateful for the people, resources, and opportunities that continue to support me in my journey of life as a cancer survivor. Life is good. Truly, it is good to be alive!
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!
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!
