Stories from a Life I Didn't Plan

Category: chemotherapy (Page 4 of 5)

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.

 

Best-laid Christmas Plans Derailed

Best-laid Christmas Plans Derailed by Family Illness

The best-laid Christmas plans derailed due to unexpected family illness. While on chemotherapy, I maintain a quiet, sequestered life to protect me from the risk of infection. Once I realized my chemo schedule would leave me free the entire week of Christmas, I made plans with family to spend the week at my elder sister’s home and go across town to my parents’ home for various activities, including gift opening and Christmas dinner. I anticipated this special time to enjoy with my loved ones. Little did I know a severe, highly contagious virus would sweep through the household, resulting in our best-laid Christmas plans derailed.

Best-laid Christmas Plans Derailed

Annual Tradition of Admiring Christmas Light Displays Was Missing a Few Important People

Early in the week, it became apparent that sickness had hit my parents’ house. First one, and then another fell ill with a nasty respiratory virus, making it imprudent for me to be in close contact with my dear family. Thankfully, my sister’s family across town remained healthy, so I stayed nearby with the hope that the virus would pass quickly.

 

We had also all joined in a family meeting using Skype early in the week, so I began to think about Skyping with one sister who could not be with us for Christmas for gift opening. It seemed to be the next best thing to being there.

As Christmas dawned, family members were still ill, making it impossible for me safely join them for our planned celebration. So, we cooked dinner in separate kitchens across town, transported dishes for Christmas dinner and gifts, and then logged into Skype so that we could watch as gifts were passed around and opened.

Although I did not get the hugs I normally enjoy while home to visit, amazingly, the joy of Christmas surrounded us and we were able to watch via Skype as each one peeled back wrapping paper of carefully selected gifts. Skyping made us slow down and focus on each individual family member, appreciating the joy of receiving a well chosen gift and the resulting gratitude expressed. And, we sent one another air hugs and other expressions of love through cyberspace.

While we had seen our best-laid Christmas plans derailed, we still savored a delicious, potluck home-cooked Christmas dinner and celebrated this special time together through the miracle of modern technology.

Losing Hair on Chemo

When I first met with the oncologist about my impending chemotherapy regimen, he told me that most people do not lose their hair on this chemotherapy. Only about 15% would tend to bald. He emphasized that my chemo is a medium sort of chemo, which would not be too onerous. Unfortunately, several weeks ago I noticed I was losing hair on chemo.

All of a sudden, my hair started ending up in my mouth, in my food, all over my clothes and the floor. It was coming out in my comb and brush, lining the sink and the tub whenever I was near. Even the dust bunnies that accumulate on my hardwood floors are now somewhat blonde like me.

Since my oncologist had assured me I would not lose my hair, I was alarmed thinking that I was going to be bald. This was not supposed to happen to me! I was not supposed to be losing hair on chemo. Chagrined by my vanity, I felt doubly grieved: first, for losing hair on chemo and second, for feeling so mournful about my hair loss.

One day, I awoke with such terrible bed head that I had to rejoice that I still had enough hair to support this amazingly, ratted mess. The silliness of my appearance and the sheer volume reassured me. And, after all, hair grows back, and thankfully mine normally grows quickly.

As my hair continues to thin, admittedly I still struggle with how cancer and chemo have changed my life. I wasn’t supposed to be losing hair on chemo, but in my imagined version of my life, I wasn’t supposed to have an aggressive, fast growing cancer before I turned 50. I wasn’t supposed to have a port infection, either.  Perhaps finding myself the exception to these medical statistics should make me feel exceptional, a stand out from the crowd. Still, I would settle for not being such a medical exception, unless it is to never have cancer again–in spite of the statistics.

 

Losing Hair on Chemo

Is that really my hair?!?

 

What Should Go in My Chemo Bag

 

Soon after receiving the news that I would benefit from chemotherapy, I began to research chemo and learned I could make the cancer detour easier on myself if I learned what should go in my chemo bag.

I found numerous posts on Pinterest about chemo bags. So, with the help of my family, I put together the biggest chemo bag I have seen in the chemo infusion room. Each chemo bag is unique to the patient, but there are certain things I have found help make time in the infusion room more pleasant.

My Chemo Bag Essentials

Family members have contributed to my bag. Because I get cold in the chemo room, I take a fleece blanket that my mother made me to keep me warm. Coffee Beans, the Build-a-Bear my youngest niece made me, keeps me company and has come close to celebrity  status in the infusion room. Comfy, red sequined slippers from one sister keep my toes warm and pillowed. Encouraging words on smooth stones from my oldest sister and a friend remind me to have hope and to just breathe.

A few other things I include are reading material, music, snacks (especially saltine crackers for nausea and hard candy to mask the taste of saline when the port is being flushed or disagreeable medications start flowing) or a healthy lunch. I also take a journal and pen, art supplies to draw or color, hand wipes and sanitizer, and a mask so that I can go to sleep when the meds start to make me sleepy.

If you are wondering, “What should go in my chemo bag?” or have a friend asking that question, then I hope you find some of my thoughts helpful. Many have shared suggestions for how to prepare for chemo so you can easily find resources to support your loved one or yourself on your cancer detour. These resources have shaped how I decided what should go in my chemo bag. If you are on Pinterest, you may check out my  Cancer and Chemo Board for some ideas I have found helpful.

What Should Go in My Chemo Bag

Coffee Beans, the Build-a-Bear my youngest niece made me.

Other Chemo Essentials

Two things I always try to take to chemo do not fit in my bag: a positive attitude and a smile for the courageous patients around me; the compassionate caretakers who do all they can to help me to be well; and kind, efficient office staff who ensure my care runs smoothly. I believe those two things might be the most important of all.

 

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