Stories from a Life I Didn't Plan

Category: cancer (Page 4 of 5)

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.

Chemotherapy Dietary Restrictions

Before beginning treatment, I met with a physician assistant who reviewed lists of dos and don’ts, including chemotherapy dietary restrictions. I had no idea there would be so many things I would be avoiding and easing out of my life when I began this cancer detour.

Little by little I am implementing both short-term and long range dietary modifications to improve my health and overall chance of beating this disease.

Chemotherapy Dietary Restrictions: Short-term Modifications

While on chemo I try to avoid anything that would cause foodborne illness. Foods I avoid are unpasteurized or moldy dairy, unpeeled raw fruits or vegetables, undercooked meat (yes, that means sushi), and unpasteurized honey or juice. Thankfully, I have much practice with many of these measures because of the time I spent in Ecuador. In addition, I have to minimize foods containing antioxidants because these tend to promote a healthy immune system while chemotherapy is trying to undermine it, with the goal of killing cancer cells in the process. In my quirky way of trying to understand it and keep it from being something too mind-bending, I sometimes find the 1970s song, “Killing Me Softly” comes to mind.

But, seriously, if you know of anyone with a compromised immune system and would like to know more, check out the American Cancer Society Nutrition for the Person With Cancer During Treatment: A Guide for Patients and Families.

Dietary Restrictions: Long-term Changes

In addition to the short-term measures to keep me healthy while on chemo, I have taken on some major long-term dietary transformations with the goal of improving my overall health and avoiding a recurrence of this dreaded disease. The relationship between diet and cancer has been studied extensively, so if you are interested I suggest you do a search for more info. A good place to start is the American Cancer Society Guidelines on Nutrition and Physical Activity for Cancer Prevention.

My very conservative oncologist suggested I adopt a Mediterranean or Asian style diet, avoid anything out of a package, and try to simulate the ancient ways of eating. Since I do not hunt and am not yet ready for vegetarianism, I have to be more than a little creative and have come to haunt Pinterest looking for healthy recipes made from quality ingredients. One of my dietary shifts is to eat less meat, especially anything processed like deli meat, sausage, ham, or bacon; and eliminate from my diet bottom dwelling seafood, such as shrimp, oysters, scallops, etc., which are all believed to contribute to certain cancers.

As a great carbohydrate lover, leaving behind the packages of pasta and bread has proven a greater challenge than omitting so many meaty choices. Thankfully, my mother has been willing to support me in this dietary revolution and explore the offerings at the local mill to find tasty whole grains that would add healthy carbohydrates into my diet. We have had fun taste-testing some of the obscure finds like spelt, which has become a favorite with its nutty flavor and satisfying texture. A vegetable spiralizer has offered plant-based substitutions for pasta. Tasty zoodles, or zucchini noodles, have become a healthier, but scrumptious pasta alternative.

Lamentably, I have found no solution for my sweet tooth. So, I consider tasty, baked goods my chief dietary vice because the pastries and goodies I crave are definitely processed and made from packaged ingredients. Over time as I adjust to this new eating lifestyle, I hope to reduce my sugary indulgences.

Chemotherapy Dietary Restrictions: New Favorite Recipes

You may be thankful that you will not be bumping into me at a potluck bringing some strange, unappetizing dish to share, but I have pinned nearly 600 healthy, yummy-looking recipes on my Greens, Fingers, Bites, and Sides and  Hearty Dishes That Look Yummmmmy! Pinterest  boards that I am anxious to try. A few of my favorite recipes I that have tried so far are Baked Honey-Marinated Cod, Greek Marinated Chicken, Baked Teriyaki Chicken, Herb and Citrus Oven Roasted Chicken Recipe, and Roasted Brussels Sprouts with Cranberries and Balsamic ReductionI love trying the recipes and consider it an adventure in discovering new, savory foods.

What are your favorite healthy, clean eating recipes you and your family liked? I would love for you to comment below or email me using the contact link in the menu bar or on the bottom of the page. Frankly, I can use all of the creative eating ideas I can get.

While cancer may be my detour with its various short-term chemotherapy dietary restrictions, a healthy diet is an integral part of my journey of life.

 

 

 

 

Ice Cream | Chemotherapy side effects: cold sensitivity

Coffee Beans, my quiet chemo room companion.

Coffee Beans, my quiet chemo room companion.

Since I started chemotherapy, I have noticed I do many everyday things without a second thought. One of the most persistent side effects I have is cold sensitivity. If I am outside where it is cold, if I touch something cold, or if I consume something cold, I feel pinpricks where I am exposed to cold. I found that I have even been taking ice cream for granted.

Several times a day, I have to compensate for my cold sensitivity. When I wash my hands, I have to be careful to let the water warm up before putting my hands under a faucet running chilly water. If I take one of the meals my mom has made for me out of the freezer, I have to remember to put on my gloves to prevent the shooting pain from smarting my fingers. If I forget to microwave my glass of water or juice, I have an unpleasant reminder that flows down my throat with the liquid.

An oncology nurse warned me that I would have to let ice cream melt if I wanted to eat it while on chemotherapy. This was not welcome news.

One of my great loves in life is ice cream. I have happily made many dietary adjustments  to maximize my health and my chances of beating cancer. But,  ice cream or frozen yogurt are treats are hard to let go.

When I lived in Ecuador, I indulged myself in the plentiful boutique ice cream shops that offered economical and scrumptious specialty ice cream. For an incorrigible ice cream connoisseur, it was something like heaven.

While on chemo it have realized I was taking ice cream for granted. When chemo was unexpectedly pushed back for a few of weeks, I noticed my cold sensitivity disappeared and I spent the entire week trying out various local boutique ice cream shops.

Although I wish chemo had not been pushed back, I was just this side of heaven as I enjoyed different flavors of my frosty favorite.

How Are You Is a Complicated Question

A couple of weeks ago, a genuinely kind, concerned person asked me how I was. That seemingly innocuous question hurtled me into utter confusion. I found myself simply staring mutely until the moment was interrupted. Since receiving a cancer diagnosis last August, I have found that how are you is a complicated question.

Before I was diagnosed with cancer, I could easily answer when asked how I was. But, after getting the cancer diagnosis, I realized that I am not confident answering that question. Following surgery, a series of tests determined if there was any visible cancer remaining. In the meantime, I had no idea how I was. That is when I realized that for me how are you is a complicated question.

Since beginning chemotherapy, I have had no diagnostic tests. Chemotherapy obscures the results of many tests used to diagnose cancer, so I do not know if chemo is doing what we believe it will or not. I trust in my educated and experienced oncologist to make decisions he knows will result in the best outcome for me, but I still do not know how I am.

Every week or two, I have blood tests to see how my body is responding to chemo. But, in between times, I may feel perfectly well–at least well for a person on chemo–yet my blood work will show low results, which means that my body is not really doing as well as it should be.

Because I do not know the answer to how are you, recently I asked my oncologist how I am doing and explained how I had not known to answer the question when people asked me. I am grateful for his response. After telling me it was nobody’s business how I was doing, he further shared, with wisdom and economy of words, “Nobody knows how they are doing when they are on chemotherapy.” I am going to keep his response in mind when asked that so very complicated question and simply respond that I do not know, which I hope will be an improvement over a blank stare.

Ways to Support Someone During a Serious Health Crisis

ways to support someone during a serious health crisis

Chemo Infusion Number 2

Since I began leading a very sequestered life due to chemotherapy, many of my family, friends, and neighbors have offered to help me however they can. So, I have been thinking of suggestions for ways to support someone during a serious health crisis.

As an independent, single person, sometimes I find asking for and accepting help difficult. I hate to inconvenience anyone and hesitate to ask if I think I will be imposing. And frankly, sometimes I cannot think about getting dressed, let alone what I might need. Nevertheless, I am deeply grateful to these kind folks for their offers and have taken many up on their kindness.

First, try to find out about the person’s needs and health limitations. Then, decide how you are able and willing to help . Finally, make a sincere, specific offer of assistance.

In addition to the myriad tasks my mother does for me, I have a neighbor and friends who get me groceries or other miscellany at the store; a friend who offers to go to chemo with me; a friend who brings dinner on the weeks my mom is at home and brings various items from the store; a sister who acts as my personal shopper and is not a bit bothered by becoming the annoying person in the store on her cell phone while she FaceTimes me to show me a product before making a purchase; a friend who comes over to walk with me; and another friend who calls to say, “I’m on my way to Target or Costco, can I pick up anything for you?” It is a lot less intimidating to ask someone to buy something for you when they are already at the store.

One of the casualties of health is energy. Staying on top of everyday tasks as simple as housework and meal preparation can become an unachievable goal.  If you have time and are willing, consider offering to sweep, mop, vacuum, clean the bathtub, launder clothes, or take out the trash. Maybe bringing a meal would be helpful, once you find out what dietary restrictions have to be followed. Perhaps you could take the car to get gas or offer to drive to appointments or help with chores, like banking or going to the post office. If they are in a chemo fog, or have chemo brain, they might need help organizing tasks like paying bills and keeping track of medical appointments and prescriptions.

If you are not sure what you can do, I have a few other suggestions of ways to support someone during a serious health crisis, and I encourage you to check out other websites that share creative ways to be supportive, like 20 MORE Things You Can Do When Someone You Love Has Cancer,  44 Ways to Make the Day of Someone With CancerHow to Help a Friend Going Through Treatment for Cancer, My Angry Cancer, and We Need to Stop Saying, “Let Me Know If You Need Anything” .

For me, when my friends have been specific about how they can help me, it makes it a lot easier to say, “Thanks. I would really appreciate that.” And, I do. I truly do appreciate each kind act you do for me.

 

Bestowing the Gift of Presence

Before I was diagnosed with cancer, I often felt inadequate and uncomfortable when I went to visit friends or relatives in the hospital. Of course I would gladly pray and offer encouraging words, but I often walked away feeling as though my visit had little impact. This feeling was not because I  believed the prayers or words of encouragement that I offered were meaningless, but because when I walked out of the hospital room I saw no visible change in the physical condition of the person. It seemed like my visit had not made a difference. I did not understand that I had been bestowing the gift of presence. In other words, I showed up and accompanied the individual in the moment of need.

Now, five months after my own diagnosis, I realize that bestowing the gift of presence, or simply showing up, is the most important thing. My admission to the hospital was very quick. I had a doctor’s appointment and a couple of hours later, I was admitted to the hospital. None of my family members had time to get to me before I had to go to the hospital, so a dear friend took me and stayed with me. She supported me by bestowing the gift of presence as I did the paperwork and tried to navigate the unfamiliar workings of a hospital.

A few hours later, my mother arrived and never left. Just a few short hours after that, the cancer diagnosis was made and I had another diagnostic test before being prepped for surgery the next morning. So later that night, my dad and three sisters all came to see me, as well as long-time family friends. My two oldest nieces came. My older sister stayed, holding my  hand, all night in the room with me the night before surgery and my youngest sister the following night.

The presence of my family and friends comforted and encouraged me as a tangible demonstration of their love. I did not have time to grow anxious about surgery or even about having cancer because I was surrounded by the people most important to me. As my hospital stay extended, other friends came to visit. They were there with me and somehow this unexpected cancer detour felt better, easier, and far less frightening.

As  I continue with chemotherapy, I have many friends and family members who are with me. They call, send texts, cards and gifts; go with me to appointments; post comments on my blog, Facebook page or Caringbridge pages, surrounding me with their prayers, love, and encouragement.

This cancer detour is a lot less lonely and frightening because of all of you. Thank you for bestowing the gift of presence. Your presence makes a world of difference to me.

 

Managing Chemo Side Effects

One of the most important conversations I had with the oncologist before starting chemotherapy highlighted all possible side effects and how to go about managing chemo side effects.

Nausea, cold sensitivity, infertility, hair loss, skin dryness, neuropathy, low white cell count, low platelet count, risk of infection, mouth sores, etcetera. For each chemo regimen, the list varies, but nothing on any list is very appealing.

Knowing what might lay ahead helped me feel equipped and  empowered as I started chemo. In fact after the first round of chemo, I thought I knew what to expect and talked to the oncologist about how to mitigate the most bothersome side effect that I had experienced. I felt confident that I was well prepared for dealing with this chemo thing.

Then came round two. Side effects were similar, except that the main side effect from round one was no longer an issue and the preventive measures I took actually made me miserable.

From round to round, I have found that the side effects can vary somewhat or other times widely. Sometimes one will be worse than another and just as soon as I have a plan with the oncologist to mitigate the most bothersome, another pops up and the first one doesn’t seem so bad.

Yes, it makes planning difficult. But sometimes, it is also a relief when nausea that had persisted from round to round suddenly isn’t a problem at all in one round. I still believe that being informed and prepared for chemo is preferable to going in without the information. I am grateful for sites like livestrong.com and the American Cancer Society that provide information about the side effects of chemotherapy for different kinds of cancer.

For me, managing chemo side effects is a little like playing a video game: Just when you think you have it mastered, you get bumped up to the next level where the environment is the same, but the variables have changed.

They say forewarned is forearmed and indeed I can say that at this point in my chemotherapy I am ready for just about anything.

 

« Older posts Newer posts »

© 2024 Hijacked

Theme by Anders NorenUp ↑