December was incredibly busy. In addition to the frenetic energy of five- and six-year-olds as they anticipated the arrival of Santa, I had what must have been an all time high number of health related appointments. My teaching schedule led up to the Friday before Christmas and with eleven appointments for my health, little time for shopping or card writing remained. Needless to say, I accomplished little in preparation for the holiday, which passed quietly and simply.
However, some very exciting things happened during December and the early days of January. In December, I had follow-up tests to monitor my progress after chemo and had mixed results from the PET/CT scan. While there was no evidence of cancer (grand shout of jubilant relief), a growth noted on my original CT scan from 2015 showed enlargement. Consequently to avoid future problems, the oncologist referred me to another specialist for a biopsy to determine the nature of the growth.
Although the oncologist recommended I take a break, enjoy the holidays, and schedule the biopsy for February or March, the office staff from the specialist’s office called, worked me into the schedule for a consult, and then scheduled me for the complicated biopsy just two days later–all before the end of the year. I think it is the only time I have ever had a health care provider work me in before the new year in order to take advantage of my deductible already being met.
The growth turned out to be nothing worrisome. In fact, I was probably born with it, but for some reason it has gotten bigger.
Anticipating the preliminary findings of the biopsy would ultimately be confirmed and with my oncologist’s blessing, I met with the surgeon in preparation for the removal of my mediport.
With family far away and friends back to work after the holidays, I decided not to undergo general anesthesia, but instead to have my mediport removed using local anesthetic so I could drive myself to and from the hospital. As a non-emergency, outpatient procedure, mine was pushed back from 9 a.m. to 10:30 a.m., then to 1:00, and finally to 3:00 p.m. All of the staff were very kind and apologetic about the time changes, but for me the exact time of day simply did not matter.
While in surgery, everything went smoothly. When the surgeon said the mediport was out of my chest, I cried–not from pain or discomfort, but from sheer happiness.
Before Christmas when my oncologist told me he had no reservations about having my mediport removed, I was over the moon–not because the mediport caused undue discomfort, but because it symbolized the pain and uncertainty of cancer and chemotherapy. Having my mediport out heralded my return health and traversing the final length of the cancer detour.
Although for the next four and a half years I will be monitored regularly to detect any sign of cancer, I am content knowing the expectation of trained medical experts is that in 2017 and beyond, I will continue to be looking at cancer in the rearview mirror.
This morning I had the last of my follow up scans and the unofficial word is that it looks good. Of course, the oncologist has the final say about what the scan means and how to proceed, but my Christmas present to myself is to see him on Friday to hear the (what I expect will be only) good news.
I cannot wait to hear it from the doctor himself and to say goodbye to my tiresome companion, the mediport, but until then I am content to know that everything is looking good!
Christmas looks quite a bit brighter tonight than it did when I woke up this morning.
With both my scan and appointment with the oncologist in the past, I find myself in the interlude between the scan and the all-clear. While the results of the scan showed no cancer, it did show an enlarged spleen, which the oncologist believes must be investigated. So, instead of saying goodbye to my faithful bosom friend, my mediport, we will continue to be inseparable until this is resolved.
I know there are worse things that could happen or that could have shown up on the scan, but I have let this little hiccup get me down. In fact, I have had little to say for a while now because first the scan and then the results have been weighing on mind. I would like to say that I believe all will be well, but I cannot dismiss health related concerns as readily as I did pre-cancer.
The reality is that what the oncologist is investigating is probably due to one of the drugs administered during my chemotherapy regimen: specifically, a medication to help my body produce platelets when the chemo was taking a heavy toll on my body. That is the best guess at this point, but only further testing can rule out something more troublesome.
While my head knows the medication probably accounts for the enlargement of the spleen, I cannot get my emotions to accept that rational probability. Nevertheless, I do believe that with God’s strength and the faithful prayers and encouragement of family and friends, I will be able to deal with whatever comes of further scans.
If a little CT scan brought up something so insignificant to follow up on, what will a PET/CT bring?
After being ill for so long, first with undetected cancer and then from chemotherapy treatments, I no longer really know what normal should be. As my first post-chemo CT approaches, I find myself a little less optimistic and more often considering the negative side of “what ifs.” While I feel well, I am very tired. However, I keep a very full, hectic schedule. Teaching kindergarten, while rewarding, is emotionally and physically exhausting. Although I have no reason to believe I am anything but tired yet healthy, still the smallest twinge can raise alarm, however short-lived.
Friends and acquaintances have shared that after their bouts of cancer they also experienced “scanxiety” and a hyper-vigilance bordering on paranoia when it comes to matters of health. Before being diagnosed with cancer, we had a sense of overall well-being that allowed us to dismiss minor aches and pains or physical complaints. We experienced an expectation of continued health that was disabled when we received our cancer diagnoses.
The good news is that this was parent teacher conference week at school. I had so little time I barely ate or slept. One day, I spent about 13 hours at work, which was more hours than I spent at home. This weekend, my sister is coming to visit and we are going shoe shopping, so that should help me keep from dwelling on Monday’s CT and how it will turn out.
Veteran’s Day weekend I will be trying to keep myself busy so that I don’t spend excessive time fretting about the results of the CT and waiting to get either an all clear or something else.
On the one hand I expect things to be fine. On the other hand, I didn’t realize anything was wrong with me when I had the deadly disease growing inside me. I have come to realize, to my chagrin, that hypervigilance or paranoia is the new normal.
I couldn’t help but think of where I am a year after beginning chemo, while also remembering the beginning of that chapter in my life. Over the weekend, the anniversary of the installation of my chemo port came and went and today is the six month anniversary of the end of chemo. But, yesterday I found myself a bit melancholy thinking about how one year ago I had my first chemo infusion. I remember I was scared, my port incision was still very tender, and the sensations I experienced during that infusion were unpleasant and unfamiliar. Similarly, my emotions were somewhat raw and I wrestled with the “Why did this happen to me?” and “Oh my goodness, I had cancer and I am having chemotherapy!”
Although I may still remember with sadness and disbelief that cancer and chemotherapy were once a part of my life, today I am thankful to be looking back at the cancer detour and hoping to never find myself on such a path again.
The anxiety of my upcoming CT scan sometimes looms large in my mind, but I try to remind myself that worrying won’t change the results and that a positive outlook is good for everyone concerned. Today, I rescheduled my scan from Friday, November 11 to Monday, November 7. I was fretting that the report wouldn’t be ready for the oncologist when I saw him the following week.
So, getting rid of that worry simply took a phone call. If only all of our problems could be rectified just that easily.
I feel a bit of a hypocrite worrying, especially since I read my students a book called, What Do You Do with a Problem? In the book, the author says that problems are beautiful and hold opportunities. If that is the case, then I can honestly say that cancer and chemotherapy were opportunities I could have lived without!
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!
On Tuesday, life took a major shift from cancer patient to cancer survivor when the oncologist cleared me back to regular, everyday life. With the exception of taking care to not put too much pressure on the mediport site, I can do just about anything I used to do. And, Monday, it is back to work. So, little by little, I am venturing out into the world and resuming some of those normal activities that were restricted until this week.
Naturally, on the way home from the oncologist’s office, I stopped by the supermarket to pick up some fresh fruit that I could enjoy without have to peel to eat. Unpeeled raw fruits and vegetables were restricted from my diet until given the green light after chemo, so I was anxious to get some of my seasonal favorites. Surprisingly, instead of finding going into the grocery store exciting and freeing, I found it a little overwhelming because of the number of people in the store. I bought minimal fixings for salad and quickly exited the store. Nevertheless, I thoroughly enjoyed eating lettuce, raw carrots and unpeeled tomato.
However, the following day, I set out at a different time, in a less crowded location, and found delight in selecting berries, grapes, apricots and nectarines–none of which are going to be peeled. Meals have been fruit heavy since then, to the delight of my taste buds! Although I may continue to seek off times to shop, as much as possible, until I overcome my discomfort with the crowds, I am enjoying picking out fresh fruits and vegetables to reincorporate into my diet.
Living Strong, Living Well
This past Monday, I began the Living Strong, Living Well program at a nearby YMCA. The professor from Stanford University who facilitated the orientation session emphasized that the program’s focus was wellness, so we were not obligated to state what kind of cancer we had had or anything to do with our treatment or the disease. Instead, she asked us to share what we hoped to get out of the program and something we valued.
These instructions fit in perfectly with my goal in joining the program, which was to transition from cancer patient to cancer survivor, and to no longer be defined by the disease that gripped me, but by who I am as a person. It was incredibly freeing to introduce myself and to say what I wanted to gain through the program and what I valued. Not to have to tag on anything about the diagnosis, the emotional roller coaster that started after receiving a cancer diagnosis, or the agonizing months of treatment was a redefining moment and one more step in seeing myself as a someone who is healthy and thriving.
Back to School
In preparation for my return to school for the last eight days of instruction before summer break, I needed to touch base with the long-term substitute teacher who has been in charge of my class and my first grade teaching partner before Monday. It was bittersweet heading back to school yesterday to meet up with them, but the anxiety I felt before arriving, and the immediate coughing fit that overcame me upon my arrival, quickly disappeared as I was warmly greeted by colleagues and students.
Maybe someday my hair will grow long and thick like it was in 2009
I must confess I still find it difficult not to protest when people comment that I look good and that all the rest I had must be the reason. Because my work colleagues have not accompanied me on the cancer detour, and in fact have not even been told by me what illness I had, they do not know what caused my weight loss, that the reason my hair looks almost exactly the same as before is because what didn’t fall out quit growing, or that the months of chemotherapy could hardly be described as restful. While the inward battle of emotions rages, I try to maintain a benign countenance and politely respond to their well-intentioned comments. Admittedly, I am extremely over-sensitive, but, as with all other things, I hope this too will pass. And one day my hair might grow back long and thick!
As students rushed up to greet me with hugs, I fought the urge to pull back for fear of contracting some illness. For months I have dutifully avoided human contact to prevent infection, so I am still adjusting to the fact that my immune system can now battle disease and I no longer need to take such rigid precautions. I may have to continue to remind myself of this fact over the next few weeks, until it becomes an automatic reaction to enjoy the embrace of others without trying to pull back.
Meeting Up with Friends
While on chemo, I rarely went out for meals because of the risk of infection. If I ventured out, it would normally be to sparsely occupied places where I could maintain a safe space from other diners. Now that I am transitioning from cancer patient to cancer survivor, I can meet up with friends in public without having to estimate if I am far enough away from any diner who might be coughing or sneezing. While I do not find coughing or sneezing pleasant to be around, I am happy that I am able to meet up with friends over a meal to reconnect after these months of virtual isolation during chemo.
Although meeting up with friends is a welcome change, my long-term dietary changes remain in place. So, I remain ever mindful of my menu selections in order to promote continued health. I am not finding the dietary shifts difficult or limiting, but instead find something of a rewarding challenge in selecting something appetizing that is also healthful.
More of Daily Life
As time goes on, driving longer distances, sitting on a crowded beach, and other normal activities will also mark the shift from cancer patient to cancer survivor. But for now I am satisfied to gradually resume quotidian normalcy.
Which of these daily activities do you think you would most enjoy resuming?
1 Hewitt M., et al., eds. From Cancer Patient to Cancer Survivor: Lost in Transition (National Academies Press, 2006).
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!