Stories from a Life I Didn't Plan

Month: March 2016

15 Chemotherapy Skills That Will Never Go on My Résumé

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 15 Chemotherapy Skills That Will Never Go on My Résumégetting 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 conversation with 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

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.

White Blood Cells and Platelets

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!

Celebrating a Lifetime of Love

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

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.

Celebrating a Lifetime of Love

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.

Celebrating a Lifetime of Love

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.

Celebrating a Lifetime of Love

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.

I think that’s an incredible reason to celebrate.

Unlikely Fellows on the Cancer Detour

The unlikely fellows on the cancer detour have been one of my great surprises during the past few months. Soon after recovering from surgery, I looked for cancer support groups and found Cancer CAREpoint, a local non-profit offering free counseling, as well as cancer support groups.

After attending my first support group, I was hooked! It was such a relief to find other women who were grappling with doubts, fears, and struggles similar to what I was facing. From these groups, I have Unlikely Fellows on the Cancer Detour
made personal connections with a couple of the others and we talk outside of the group. I would like to say we meet for coffee, but that’s off the table for those of us who have to watch our exposure to the public due to the risk of infection.

But, when we talk on the phone or at the oncologist’s office, we may run the gamut of emotions and topics from mutually bemoaning the distressing loss of hair; to other surprising, and sometimes humorous, changes in our appearance; side effects; and family issues, just to name a few. With these faithful fellows, I have found understanding and encouragement.  Often, we are laughing one second and on the verge of tears in the next.

These unlikely fellows on the cancer detour share a body of knowledge that none of us ever expected to learn and carry a card to a club none of us ever wished to join. Yet, in the face of the unexpected turn that life has taken us, I admire the courage and commitment to live that these fellows embody, whether by courageously facing a new therapy or graciously dealing with unpleasant side effects. Some of them are survivors, some are like me and just on a cancer detour, some face recurrences, and others are walking with cancer down their final stretch of the journey of life. Their courage and grace inspire and challenge me. Some encourage with their outlook on life and others on their tenacity.  For example, one person I met was given about six months to live and seven years later is still standing.

And, the faith of one of the select few closest to me inspires me. Even with the ups and downs of treatment, she has the assurance that if God heals her then great, but if not, then he will be with her no matter what. Her faith inspires and challenges me to put life and cancer in perspective and to live with hope for the future.

The shared wisdom and experience of these unexpected companions help me as I try to find my way. Although I know each experience is unique, still their experiences help me realize that I am not alone and although they may be unlikely fellows on the cancer detour, the accompaniment eases me down the road.

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