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!
White Blood Cells and Platelets | Why Are They so Important?
The most closely monitored values during chemotherapy are white blood cells and platelets. Low white blood cells and platelets are a common side effect of chemotherapy. Levels of white blood cells and platelets reflect how equipped your body is to fight off disease and how able it is able to clot when bleeding occurs. The Mayo Clinic and National Institutes of Health Clinical Center provide nice overviews of the roles white blood cells and platelets play in maintaining overall health.
If those results fall within acceptable ranges, then chemotherapy continues. But, if they fall below established counts, chemo is put on hold while measures are taken to boost those counts. Undoubtedly you have seen commercials on television for Neulasta, but there are other medications, such as Neupogen, that also work to boost white blood cell production. The medications are painful to take because they are working in your bones to stimulate production of these much needed white blood cells. From experience, I can tell you it hurts something like those growing pains when you were young. Unfortunately, boosting the white blood cells can cause platelet production to crash. So, the oncologist has to balance it all to get the right combination so that both values fit the criteria that means a patient is healthy enough for chemotherapy.
Unfortunately for me, my white blood cells and platelets continued falling this week, leaving me with low values that were just within the acceptable range for my scheduled chemotherapy treatment this week. However, they are below what is considered normal for the average person: so I have a high risk for getting an infection or having trouble with my blood clotting if I get a cut.
Preparing me for what could be my final chemo treatment, my wise and gentle oncologist reassured me that approximately 80% of patients on this regimen only make it through treatment number ten and that I had done well to get this far with the difficult course of treatment. So, I am confident that no matter how things go on from here, that I have received the treatments I need to beat this disease and resume my course on the journey of life.
2015 Messiah Community Sing and Play Along at Stanford
Other Lows not Measured by a Complete Blood Count
What I am finding most difficult today are the instructions to be very careful to not get sick, which is a much greater risk given my low white blood cell and platelet counts. This translates into do not go anywhere or see anyone except for treatment purposes.
While on this detour, I have followed the directions of my extremely conservative oncologist and taken time off work, avoided places like grocery stores, and stayed away from other places where there are many people and the risk of infection is greatest. In December, I pled for an exception to attend the Community Sing and Play Along Messiah at Stanford University. I was instructed to go masked and gloved, but feeling like a sideshow was utterly worth it to attend this favorite annual seasonal celebration!
Solitude is starting to take a toll after months of this self-imposed, but doctor prescribed, isolation. After being admonished at my appointment with the oncologist this week to be very careful and to abandon my plans for a quick trip into the bookstore, I had to postpone plans to visit with friends in my home and change plans for my ride to chemo due to a sore throat.
While I am so grateful for the love and support of my friends and family, I am required to avoid much needed time spent with them. This week, I found it impossibly difficult and have been overwhelmed by tears more than once. Though humiliating to admit, it’s only too true. As I mentioned in my post Bestowing the Gift of Presence, we need people, especially the ones who love and care for us.
I want to be well and will do all I can to be completely healthy again, but this has not been a quick and easy detour. My strength sometimes wanes and in those moments I find myself borne up by you faithful ones. I am infinitely grateful for your persistence in accompanying me on this bumpy, unexpected cancer detour. Your companionship through cyberspace, USPS, thoughtful care packages, and other creative means gives me the encouragement necessary to keep fighting the good fight until I am back on the paved road of life’s journey.
So, if anyone has time to Skype, FB message, or call someone you know going through a challenging time, you could make a huge difference. I know I would love to say hello for a few minutes since I cannot visit with you in person. Feel free to comment below, email me, or send me a message on Facebook if you’d like to set a time to connect. Or, if you have another friend going through hard times, I encourage you to find a way to remind them you care. A fellow cancer patient called me today and after we chatted, commiserated, and encouraged one another for awhile, we both felt better. You can make a felt difference like this in someone’s life today. It doesn’t have to be a time intensive contact, but it can make a meaningful difference for the person.
Thank you for sticking with me during the high and low white blood cells and platelets!
A couple of weeks after my parents’ wedding anniversary, my sisters and I organized a dinner and family get together celebrating a lifetime of love. My parents’ love for each other and for each of us who was born into this microcosm of loving commitment.
Celebrating a Lifetime of Love with a sparkling cider toast to Mom and Dad – Photograph courtesy of Catherine Leanne Photography
I have watched my parents for a lifetime and made some observations. Frankly, I think that 53 years is a pretty amazing benchmark and I hope that the people in my life that I love will benefit from the lessons I have learned from my dad and mom.
Something I have learned from Dad and Mom is that you must care about and take care of one another. My mom fixes my dad’s favorite meals just because he likes them and it makes him happy, even if they aren’t her favorites, too. Dad always carries in the groceries and other heavy cargo to and from the car for Mom. Their relationship is symbiotic. They look out for one another and show their care and affection in these simple, yet meaningful ways. Simply put, they are a great team.
Dad and Mom also remember why they fell in love in the first place. But, even more than the memories of the love at first or second sight, is the lifetime of shared experiences, the highs and lows, the stresses and accomplishments that glue them together. After 53 years, sometimes it is hard to see who one is without the other. They complement one another.
I might even dare write, although they might take issue with my choice of words, that my parents are unabashed feminists. During my lifetime of family memories, I only remember my dad supporting and encouraging my mom to follow her interests and reach her goals. He always believed she could do whatever she put her mind to do. It never diminished who he was and he never felt threatened by her achievements or by hearing her opinions. They made decisions together. They discussed things as equal partners and proceeded down agreed upon, sometimes heatedly agreed upon, paths. This model of sharing life together and joint decision making is an aspect of their relationship that I am proud to have as part of my heritage. It helped to shape me as the independent and confident person I have become.
Likewise, Dad never set limits on what he thought we, his four daughters, could do. He taught me to change a tire when I was old enough to drive a car, but urged me to get a good job so I could be in a position to have someone else change it for me. Dad told us we could do anything we wanted. There were no boundaries Dad put on our dreams. I am grateful for Dad, who affirmed and believed we could do the amazing.
Mom was always the heart of our home. She is the one who greeted us when we came home from school, taught us to cook, bake, sew and other lost arts of homemaking. Mom read us bedtime stories and colored in our coloring books with us. She is the one who faced down teachers when we came home in tears and later explained to us why we were in the wrong once she understood the grown up version of events. Mom demonstrated how to be a loving, protective caregiver, while modeling how to be a competent, capable woman, worthy of being listened to with respect for her wisdom, knowledge and experience.
The Original Six Crowes – Photograph courtesy of Catherine Leanne Photography
At the center of their relationship, Dad and Mom have faith in God and that anchors them and the rest of us, too. Through dark and difficult days, Dad and Mom are quick to reassure us that God is faithful and that he hears our prayers, even when we do not see it played out immediately in daily life.
In recent years, our family has faced daunting, unexpected challenges, the latest being my detour with cancer. Yet in the midst of it all, Mom and Dad pull together, lean on one another, and become the oaken strength needed to pull us all through. Their unshakable faith in God and in each of us steers us all through the deep waters of the unknown with the assurance that we will be okay. Things may not end up how we thought or wanted, but we will still be okay.
One of the fears I had for my parents as they grew older was that they would find retirement boring and become antiquated and dated in their thinking. Throughout my life, I had heard of people who could not figure out what to do with themselves and their health deteriorated. Or, they lost touch with the technological advancements of the times and unwittingly ostracized themselves by becoming difficult to include because of their inflexible ways.
Family Celebrating a Lifetime of Love – Photograph courtesy of Catherine Leanne Photography
This has certainly not been the case with my parents. In their retirement years, they have disproved the old saying, “You can’t teach an old dog new tricks.” While I could comment on that being due to them being Crowes and not dogs, I will resist the temptation and simply say I think it is inspiring.
Since retiring, my parents have each developed new and unique interests they pursue individually. I can imagine how hard it would be to have dinner conversation with someone every night if both did the same thing all day everyday. Their pastimes give them something novel and interesting to share with one another and with the rest of us. Mom has developed her knowledge of technology and helps Dad with his projects when needed. It is exciting to see them craft their skills in new areas.
As you can see, we had compelling reasons to be celebrating a lifetime of love with our parents and boy, did we have fun! My sisters and I decided to put Dad and Mom through all the traditional paces of young love, like cutting the cake together, linking arms to drink to a teetotaler’s toast, and kissing on demand. They good naturedly played along, making the evening all the more festive.
But, we also planned activities that we had shared with Dad and Mom over the years. We played games, sang gathered around the piano while Mom played, and ate a delicious meal together, all of which was an integral part of our family life when we were growing up. And, I remembered how much fun we were together! I smiled and laughed and enjoyed celebrating a lifetime of love because I am a result of that love and commitment. I would not be the person I am today without that specific set of parents and those smart, multitalented, wild, and crazy sisters.
Surrounded by this great throng of people, I was struck by the many and varied talents represented. And to think, it all started with a young couple in love. Each of my sisters is intelligent, articulate, artistic, and funny. Their children have benefited from their unique talents and developed their individual expression of the innate artist within.
My eldest niece, Catie, has developed one of her great talents into a successful photography business and has graciously allowed me to use her photos in this post. Please check out more of her work in the following links: Catherine Leanne Photography and Catherine Leanne Photography Blog . If you know of anyone in need of a creative photographer for an upcoming event in Northern California and beyond, I encourage you to contact Catie.
Two Original Crowes’ Anniversary Cake – Photograph courtesy of Catherine Leanne Photography
Each one of my sisters used their gifts and talents to organize this celebration. Alice planned the menu and delivered food from Tantardini’s, a European Bakery-Deli. Absolutely delicious. She also spearheaded the keepsake picture frame we all signed for a picture taken by Catie to commemorate the celebration. Leanne coordinated the upcoming not-so-secret-now getaway we decided they needed as a break from the stress of chemotherapy and other daily pressures. Lynnette oversaw the creation of the balloon bouquets by her teenaged sons, designed the table centerpiece, and created a cake that was both delicious and beautiful (assisted in the final touches by her twin sister, of course.) There were other things they did, but my sometimes unreliable, chemo affected brain cannot recall it all now.
Forgive me if I have crowed enthusiastically over my family, but I feel enormously blessed to have been born to these parents and to have grown up with such witty and interesting sisters. As we were celebrating a lifetime of love, first and foremost, we celebrated our parents’ love for each other, but I couldn’t help but reflect on how much love over our lifetime they have lavished on us.
