This week, a port flush triggered unexpected emotions. Until about three months ago, putting on Emla (lidocaine and prilocaine) cream over my mediport and then covering it with Glad Press’n Seal Wrap was standard routine for chemotherapy day. Every other Tuesday morning, I prepped my chest an hour before my chemo appointment. One day, I forgot. But, it taught me to never again forget. The Emla cream numbs the tissue over the mediport site, making it less uncomfortable for the patient when the nurse accesses the port (inserts the needle connected to tubing into the port.) A syringe or longer length of tubing can then be attached to flush the port, draw blood, or administer IV medications, such as chemotherapy.
Although I no longer receive chemotherapy, my port remains with me until after I have my first clear CT scan. Currently, my CT scan is scheduled for mid-November, six months after being released back to everyday activity, so the port cannot be removed until some later date. While the port remains in place, it must periodically be flushed with Heparin to make sure that it is functioning properly.
So, on Monday, I had my first post chemo mediport flush. As I began going through the familiar motions of applying the Emla cream and Glad Press’n Seal Wrap, emotions began to wash over me and I felt unaccountably maudlin. Just the physical memory of that process invoked feelings I experienced during chemotherapy. In fact, it felt almost like I was going to chemo; the sense of dread and uncertainly all flooded back. Although those feelings lessened as time passed, the sadness remained for several days and fatigue along with it.
Having the port flush the same week I was preparing my comments for the American Cancer Society Relay for Life of Saratoga Luminaria Ceremony probably exacerbated my level of emotion. Combined with the sentiment of the port flush, the season of anniversaries, and reliving my cancer detour, I was feeling a little less sunny than usual for a couple of days. Thankfully, feelings are not reality and soon the truth of me being happy, healthy, active, and optimistic rebounded and life turned right side up again.
As I thought through my story and what I could share that would encourage others who have been touched by cancer, I realized once again that it is my faith in God, and the people I care about and who care about me that enable me to move past cancer with anticipation and excitement about the future.
Thank you for being among those who have encouraged and helped me to move forward expecting good things ahead!
The lingering effects of Chemo, such as chemo induced peripheral neuropathy and fatigue, continue to play a part in everyday life. Experts tell me both can take up to a year to resolve, and in the case of fatigue, sometimes even longer. However, life goes on and I am finding ways to cope, although not without being sometimes caught off guard.
Lingering Effects of Chemo: Neuropathy
Lately, I have noticed the neuropathy I experienced in my fingers and feet has been less and less noticeable. At first, it seemed as though it would improve for a few days and then would seem as uncomfortable as ever. However, most recently I have been feeling it just slightly in my hands, although more pronouncedly in my feet. I am relieved and happy this sensation seems to be dissipating and hope soon it will be completely gone!
Lingering Effects of Chemo: Fatigue
Life is busy. There are many things to do to keep house and work. My list of things to do seems endless. I try to do things in chunks and to make the most of the energy I have, but I still sometimes find myself surprised when I come home from a grocery shopping outing and feel the need for a nap. Fatigue makes keeping up on household chores a challenge, so I have adjusted my expectation for what I can get done and have tried to organize things so that I have clean clothes for work and food to throw together for meals. But, beyond that, I simply have had to relax and let my best be okay for now. This is not forever, so I trust that before long, it won’t be such a chore to keep up on chores and the upkeep of housework will feel a little less overwhelming.
Lingering Effects of Chemo: Stunted Hair Growth
Happily, I have short hair sticking up on the top of my head where some new growth has begun to crop up. Although I have begun to see some hair growth in places, there are other places that remain oddly hairless. I do not know if I can expect this to continue long-term or if it just needs some more time to begin to show up.
Lingering Effects of Chemo: Sunburn
Earlier this week, I had the pure joy of taking a nap near the Pacific Ocean. A lovely pair of palm trees provided shade for my afternoon slumber, but since the breeze was somewhat cool, most of my body, including my arms and face, were fully covered, except for my legs and ankles below the capris I was wearing. Time stands still for no one, so upon waking, I found I was in full sun.
Since the breeze was refreshing I did not notice the heat and thought nothing more of it until later that evening when my ankle began to itch. Only then did I realize the bright redness on both of my legs where they had been carelessly exposed to the afternoon sun. My oncologist insisted I take care to avoid the sun while I was on chemotherapy, but after I finished chemo, I began to spend more time out of doors at various times of the day. Although I had only been exposed to the sun for about 20 minutes that afternoon, I suffered for days from the pain of this sunburn.
Hopefully, the chemo effect will soon be completely out of my system, but until then, there will be no more carefree siestas in the afternoon sun without being fully covered to protect myself from the sun.
When I was finishing up chemo, I decided I wanted to do positive things to establish a healthy lifestyle as a person who had moved past cancer treatment. All through chemo I worked to maintain a healthy, balanced diet and regular exercise routine. After treatment, I wanted to keep up these positive changes, but I also wanted to do something to mark the transition from being a patient to thriving in post treatment life.
One of the ways I found to do this was by signing up for a local American Cancer Society Relay for Life fundraiser. So, I signed up as a team captain and began recruiting people to be on my team. With just two weeks until Relay for Life of Saratoga, my team remains small. But, I am happy for those who have chosen to join me and to mark my transition back to life as I once knew it. I am grateful for their support and look forward to a fun-filled time.
Just today, I became a Hero of Hope speaker and will share at the Luminaria Ceremony during the Relay event. If you find yourself in the San Jose area and have time to come by St. Andrews Field at 13601 Saratoga Avenue, Saratoga, CA on July 23, 2016 between about 8:30 or 9:00 p.m., I will be sharing some thoughts on life from a cancer survivor’s perspective.
Other Lingering Effects of Chemo
There are other effects of chemo that remain with me. In addition to peculiar physical side effects, I have a new perspective and a more grateful attitude. While I find myself frustrated that I have not been able to keep up contact with friends as I did while on chemo, I still find myself thinking about them and am grateful for their ongoing support and presence in my life. I feel amazingly blessed to have so many people in my life who care about me and are willing to walk along what has been a difficult path this past year. Although I do not know what the future holds, I am expecting wonderful things because I know I will continue to be surrounded by the best group of people who will accompany me no matter what comes my way!
A few weeks ago, I began dreaming of life after chemotherapy and suddenly here I am. Chemotherapy is over! As I am looking back on chemotherapy, which has dominated the past few months of my life, I feel overwhelmingly grateful.
Looking Back on Chemotherapy with Gratitude to God
First, I am grateful to God that I had multiple symptoms that enabled my doctors to detect the cancer at an early stage. Often, people have no symptoms until later stages when cancer is more widespread and difficult to treat. The cancer I had was found when it was still self-contained in one region of my body and had not spread to lymph nodes, blood, or bones. This gives me a positive outlook for continued health, for which I am infinitely grateful.
God was also very near during my darkest moments. He listened when I talked only to Him about the pain, uncertainty, and fear that came with the diagnosis, deepening my faith and trust in Him. He heard me when I cried alone in the night and brought me peace and comfort. God gave me time and provided the kind of support I needed to process having cancer and being on chemo. He has given me renewed purpose and hope for a bright outlook for my future. God has taught me to “live to live” and I am grateful.
Looking Back on Chemotherapy with Gratitude to the VMOC Staff
Asleep in Chemo Chair on Infusion Day
I am also grateful for a kind, compassionate staff that cared for me during my treatment. From my first visit to the oncology practice where I received chemotherapy treatments, I received kindness and compassion from all of the staff members. Beginning at the receptionist’s desk when I walked in, to the schedulers’ desk as I left, each person made me feel like I mattered because they cared.
My now familiar name and face are readily recognized by everyone. Each person dealt kindly with me and made allowances for my emotional moments, even the negative ones. They showed sympathy and understanding when I didn’t even understand my own emotions. Their kindness and compassion created a safe place for me during treatment–so safe that I could sleep soundly for part of infusion day.
On Tuesday when I finished my last chemo infusion, I walked out of the chemo infusion room with a warm hug from one of the oncology nurses and a celebratory certificate of completion signed by all of the staff. They gathered around the scheduling desk to cheer me on and wish me well. Although it may sound silly and inane, I nearly broke out into tears. Their gesture of support and recognition was so touching and their well wishes were utterly heartfelt. They overwhelmed me with their compassion. As I am looking back on chemotherapy, I am grateful that such a kind, compassionate staff cared for me on the cancer detour.
Looking Back on Chemotherapy with Gratitude to My Family
When I was diagnosed with cancer last August, my family hastened to surround me physically, demonstrating their love and concern. They were with me in the hospital and have continued to surround me in so many special and felt ways. I have seen over and over how blessed I am to have such a loving, supportive family.
My mom came for almost every round of chemo. Only when she was sick did she stay away. Even though the long trip was difficult and so was dealing with an often cranky and emotional chemo patient, she still came willingly with a helping hand. She ran errands, cooked healthy meals from new, unfamiliar recipes, and slept in a bed made of her own fears and sadness about me having cancer. She didn’t burden me with her struggle over my health, but instead worked to lift me up and help along the way. Her hugs made life easier and helped me to remember we would make it through this together.
Dad, Mom, my sisters, aunts, uncles, cousins nieces and nephews showered me with their love in so many ways it would take an extremely long post to list all the special things they have done to show they cared for me. My sisters all picked up the phone when I called, helped me grapple with difficult issues, and loved me in the process. Each one gave me something useful and precious to help me through these challenging months: heavy duty work gloves to use when I grabbed something out of the refrigerator or freezer, comfy slippers, delicious triple ginger cookies to help with my persistent nausea, and packages in the mail with special seasonal treats.
As I am looking back on chemotherapy, I am grateful to my family for helping to give me strength to keep fighting.
Looking Back on Chemotherapy with Gratitude to My Friends Both Near and Around the World
If you’re reading this post, then I am grateful to you. Like my family, friends old and new, near and far have surrounded me with their love.
Even if I have mentioned before the dear friends who went to the store to pick up needed items for me, sent me cards and packages in the mail to encourage me, took me to chemo, took me to the hospital, once even in a borrowed Tesla Model S, drove me to or from procedures, called to remind me I was loved and prayed for, Skyped or talked via Facebook Messenger to remind me I belonged and I mattered, posted encouraging comments on my blog, Facebook page, or CaringBridge site or otherwise let me know you were praying and wishing me well, it bears mentioning once again. You were a tremendous blessing to me and I thank you!
All of you have helped me realize how rich my life is with you in it and just how blessed I am to have such an amazing network of people who care for and support me. You have made this detour less lonely and forsaken. As I am looking back on chemotherapy, I am infinitely grateful to you for accompanying me so lovingly and constantly.
Looking Back on Chemotherapy and Looking Forward with Gratitude
Last day of chemo with my 20 lb. chemo bag
Now as I am both looking back on chemotherapy and beginning to look forward to life after chemotherapy, I know I will undergo more tests and procedures to make sure I remain healthy, but I am confident that everything will be fine. And, I know that no matter where my continued journey of life takes me, even if another detour pops up somewhere down the road, I will be well accompanied.
Thank you for being in my life and for showing me how rich I am!
White Blood Cells and Platelets | Why Are They so Important?
The most closely monitored values during chemotherapy are white blood cells and platelets. Low white blood cells and platelets are a common side effect of chemotherapy. Levels of white blood cells and platelets reflect how equipped your body is to fight off disease and how able it is able to clot when bleeding occurs. The Mayo Clinic and National Institutes of Health Clinical Center provide nice overviews of the roles white blood cells and platelets play in maintaining overall health.
If those results fall within acceptable ranges, then chemotherapy continues. But, if they fall below established counts, chemo is put on hold while measures are taken to boost those counts. Undoubtedly you have seen commercials on television for Neulasta, but there are other medications, such as Neupogen, that also work to boost white blood cell production. The medications are painful to take because they are working in your bones to stimulate production of these much needed white blood cells. From experience, I can tell you it hurts something like those growing pains when you were young. Unfortunately, boosting the white blood cells can cause platelet production to crash. So, the oncologist has to balance it all to get the right combination so that both values fit the criteria that means a patient is healthy enough for chemotherapy.
Unfortunately for me, my white blood cells and platelets continued falling this week, leaving me with low values that were just within the acceptable range for my scheduled chemotherapy treatment this week. However, they are below what is considered normal for the average person: so I have a high risk for getting an infection or having trouble with my blood clotting if I get a cut.
Preparing me for what could be my final chemo treatment, my wise and gentle oncologist reassured me that approximately 80% of patients on this regimen only make it through treatment number ten and that I had done well to get this far with the difficult course of treatment. So, I am confident that no matter how things go on from here, that I have received the treatments I need to beat this disease and resume my course on the journey of life.
2015 Messiah Community Sing and Play Along at Stanford
Other Lows not Measured by a Complete Blood Count
What I am finding most difficult today are the instructions to be very careful to not get sick, which is a much greater risk given my low white blood cell and platelet counts. This translates into do not go anywhere or see anyone except for treatment purposes.
While on this detour, I have followed the directions of my extremely conservative oncologist and taken time off work, avoided places like grocery stores, and stayed away from other places where there are many people and the risk of infection is greatest. In December, I pled for an exception to attend the Community Sing and Play Along Messiah at Stanford University. I was instructed to go masked and gloved, but feeling like a sideshow was utterly worth it to attend this favorite annual seasonal celebration!
Solitude is starting to take a toll after months of this self-imposed, but doctor prescribed, isolation. After being admonished at my appointment with the oncologist this week to be very careful and to abandon my plans for a quick trip into the bookstore, I had to postpone plans to visit with friends in my home and change plans for my ride to chemo due to a sore throat.
While I am so grateful for the love and support of my friends and family, I am required to avoid much needed time spent with them. This week, I found it impossibly difficult and have been overwhelmed by tears more than once. Though humiliating to admit, it’s only too true. As I mentioned in my post Bestowing the Gift of Presence, we need people, especially the ones who love and care for us.
I want to be well and will do all I can to be completely healthy again, but this has not been a quick and easy detour. My strength sometimes wanes and in those moments I find myself borne up by you faithful ones. I am infinitely grateful for your persistence in accompanying me on this bumpy, unexpected cancer detour. Your companionship through cyberspace, USPS, thoughtful care packages, and other creative means gives me the encouragement necessary to keep fighting the good fight until I am back on the paved road of life’s journey.
So, if anyone has time to Skype, FB message, or call someone you know going through a challenging time, you could make a huge difference. I know I would love to say hello for a few minutes since I cannot visit with you in person. Feel free to comment below, email me, or send me a message on Facebook if you’d like to set a time to connect. Or, if you have another friend going through hard times, I encourage you to find a way to remind them you care. A fellow cancer patient called me today and after we chatted, commiserated, and encouraged one another for awhile, we both felt better. You can make a felt difference like this in someone’s life today. It doesn’t have to be a time intensive contact, but it can make a meaningful difference for the person.
Thank you for sticking with me during the high and low white blood cells and platelets!
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.
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.
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
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.
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.
