Hijacked

Stories from a Life I Didn't Plan

Month: July 2016

The Beauty of Relay for Life

The Beauty of Relay for Life

Walking the Survivor’s Lap

The Beauty of Relay for Life

Last weekend, I learned something about the beauty of Relay for Life. Along with family members and good friends, I participated in this 24 hour event to raise funds for and promote community awareness of cancer. Through generous contributions by team members and friends, the team raised over $700 for the American Cancer Society (ACS). The fundraising continues through the end of August, so if you would like, you may still make a contribution to Team Chel’s effort to fight back against cancer.

Team Members

Although it was a hot time of the year for the event, I chose to take part in the Relay for Life of Saratoga to mark my transition back to health. San Jose and other neighboring communities hosted their Relays earlier than Saratoga, but I wanted to be energetic enough to walk laps and in the words of ACS, to fight back against cancer.

Most of my team came in from out-of-town. My family stayed in my home.  After receiving only limited guests during chemotherapy, having a full house was a blast! I was delighted to have my roommate from my freshman year in college join my team, helping to raise funds and driving a few hours with her family to walk in the Relay.

The Beauty of Relay for Life

Team Chel!

My team and I didn’t spend the night walking like other teams, but the busy schedule still made for a tiring day. I spent a few afternoon hours napping on the field under our team tent, but walked during cooler times of the day and participated in activities throughout the event.

As I walked laps, I chatted with my teammates as well as folks from other teams that I met while walking around the track. I sensed an immediate kinship born of our common experience with the disease, whether it was as a cancer warrior, survivor, caregiver, friend, family member, or colleague of one who suffered. Our diverse experiences left us with passion to see cancer research move forward toward finding an end to the human suffering caused by the disease.

Sharing an Overcomer’s Story

In a similar same way to the how I take issue with the term cancer journey, I am uncomfortable with the term cancer survivor. To me surviving is just barely squeaking by. However, I plan to do much more than survive. I aim to utterly overcome the disease! So, I prefer to think of myself as a cancer overcomer. I overcome cancer by living life with  joy in the present and great anticipation for the future. It’s something like after nearly landing on Boardwalk and Park Place with hotels on them, I instead received a get out of jail free card.

Beyond the release and relief from the fear and uncertainty of cancer, I live mindfully, making choices about so many

things that used to be automatic or even reactionary. Now, I realize I can change my perspective to live with greater hope and purpose, while letting the little things stay the little things in life. I am not saying I have this down perfectly now, but I find a lot fewer reasons to get irritated or upset about than I used to.

The Beauty of Relay for Life

Luminaria lighting the field during the ceremony

Sharing my story during the Luminaria Ceremony at Relay gave me a chance to reflect on my life and on how the detour has affected me. Here are a few tidbits from it:

For me, cancer has always had a face. It was a face I had only seen in photos; the face of the maternal grandmother I never knew. Grandmother Alice lost her fight against metastasized breast cancer before I was even born. Her cancer story, as told by my mother and other family members, was of a painful struggle in the days when cancer treatment was limited. It was also a story of the helplessness and hopelessness of family members as they daily watched her waste away, consumed by the pain and devastation of this dreadful disease. Back in those days, there was little treatment for breast cancer beyond radical surgery and certainly besides radiation treatments, no hope for someone with metastatic disease like my grandmother’s. So, our family was marred by this life taken too soon and too ruthlessly by cancer.

The Beauty of Relay for Life

Walking laps with my niece, Shiloh.

Because of my grandmother’s battle against this disease, fear of cancer became part of my family identity. At some level, I feared I would get breast cancer like she had. So, I dutifully had my screenings. Then, last year a growth of unknown nature was found in my mammogram and a biopsy was scheduled. I was in agony as I awaited the results and then again six months later, the outcome of the follow-up screenings.  However, thankfully both were negative for breast cancer.

Little did I suspect that just a couple of weeks after being cleared of breast cancer and before the age 50, I would be diagnosed with a completely different kind of cancer that was uncommon to my family.

Although I would never wish the trial of chemotherapy or radiation on anyone, I am profoundly grateful these treatments exist. Notwithstanding the persistent tingling of Chemo Induced Peripheral Neuropathy in my fingers and toes, I am thankful I received chemotherapy. I am infinitely grateful for organizations such as the American Cancer Society that have raised funds for cancer research, patient services, and community awareness. Unlike in my grandmother’s day, we benefit from decades of chemotherapy research and trials that have led to the successful treatment of various forms of cancer, giving me an optimistic prognosis for continued health.

The Beauty of Relay for Life

Voice of Hope

Because of ongoing research into cancer treatment supported by the American Cancer Society and other organizations, if I have a recurrence, then I will have an even better chance of survival than I would have today.

Better chances at anything in life seems a good thing, but for surviving, or overcoming, I especially like those odds!

 

 

Port Flush Triggered Unexpected Emotions

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!

Paying Off Medical Bills

Out of Network Medical Expenses

Paying off medical bills was practically the last thing on my mind when I was hospitalized prior to my cancer diagnosis last summer. I did what I could to make sure the hospital was getting pre-authorization from the insurance. However, the reality is that I was too sick and weak to really think about much more than the blood transfusions and diagnostic testing I desperately needed. The doctor who arranged the hospital admission assured me that no insurance company would deny the medical necessity of my hospitalization, but he didn’t warn me attending physicians and other medical providers were essentially independent contractors, rather than hospital employees, who may or may not be part of my Preferred Provider Network.

Appeals and Discounts

I learned the hard way about this reality. Unbeknownst to me, the group of doctors who served as attending physicians in the hospital were not part of my PPO, which meant that not only was the bill paid at only 60% by the insurance, but there was an additional $250 out of network deductible. These surprising charges forced me into another unknown realm: appeals to the  insurance company and requests for discounts directly from out-of-network medical providers. Although the insurance company rejected my appeal for in-network level coverage, my requests directly to the out of network medical providers proved much more successful. Both of the providers I contacted wrote off part of the total and the billing department for the attending physicians also offered to put me on a monthly payment plan because of the size of the bill. I am pleased to say, I finally paid off that balance last month!

Paying Off Medical Bills: Miraculous Provision

While I was on medical leave for chemotherapy, the San Jose Teachers Association (SJTA) granted me sick leave through their Catastrophic Leave Bank. Essentially, sick leave donated by members of SJTA carried me through all but eight days of my medical leave. Because teachers in California do not pay Social Security Disability benefit Insurance, we cannot receive those benefits. Consequently, the provision of these days from the Catastrophic Leave Bank averted what otherwise could have quickly become financial catastrophe.

Unexpected generosity also came from long-time family friends, who with their personal insight into the overwhelming challenge of paying off medical bills, chose to help me pay off those bills. Their benevolence came just as I was facing the month with those eight days of unpaid leave, which was literally just in the nick of time.  I was completely overwhelmed to be the recipient of their philanthropy.

Thankfully, I can see the end of my medical bills within the next couple of months. I am grateful for those who have helped me financially,  for the medical insurance that covers the majority of my costs, for the job that enables me to continue meeting my financial commitments, and for a summer school teaching job helping me recover financially from the burden of months of medical bills.

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Lingering Effects of Chemo

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.

Lingering Effects of Chemo: Relay for Life

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 changLingering Effects of Chemoes, 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!

Thanks for being one of those wonderful people!

 

First Anniversaries of the Cancer Detour and Thankful to Be Healthy

Anniversaries

As we head into July, I am mindful of the first anniversaries of the cancer detour and thankful to be healthy. In fact on July 5 last year, I first began to have notable symptoms of the undetected illness within. Although I had slept through the summer into July, it had not occurred to me that I might be ill. But when July dawned, it became more difficult to dismiss the symptoms I was experiencing. However, for about a month I had no suspicion of anything worse than the stress of traveling. Thankfully, a knowledgeable doctor connected the scattershot of dots I described and ordered the right blood work to begin the diagnostic process that revealed the tumor growing within. For that, I am eternally grateful.

Thankful

In fact, I am thankful for so many things. Every day as I maneuver my way through commute to traffic on the drive to summer school, I thank God for this job. Although I have to get up before 5:30 on these summer mornings, I am grateful to be working for such a great district and to be meeting different teachers, with varied experience and background, from whom I can learn. I am thankful for the students in my class who are eager to learn and easy to teach. During these few weeks, I am implementing teaching strategies I was trained in two years ago, but haven’t had the need to try out yet. Realizing that I can use these techniques successfully to impact student learning gives me another reason to be grateful.

Along with teaching summer school, I am thankful for the Living Strong, Living Well program. Up until now, I have not loved going to the gym. I always felt out of place because I didn’t know what to do and have a terrible time trying to follow the complicated choreography of some exercise classes. Although I may enjoy that kind of exercise, I often find myself zigging when the rest of the class is zagging. It makes for a highly stressful experience that counteracts the positive feelings generated by the endorphins released through the exercise. So, I am thankful for Ron and Trish, the YMCA trainers, who partner with Stanford to offer Living Strong, Living Well that are teaching me to use machines for cardio exercise and also for weightlifting. Their kindness and patience encourage me to do my best and to use the machines correctly, while not overdoing the weight. These trainers and the other participants in the program give me yet another reason to be thankful.

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