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Stories from a Life I Didn't Plan

Tag: Unlikely Fellows on the Cancer Detour

A Year After Beginning Chemo

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!

Back to Work for the New School Year

Back to Work for the New School Year

Living Strong, Living Well Trainers and Participants

Back to Work for the New School Year

I am back to work for the new school year as of yesterday. For the past couple of weeks and with loads of help from my family and friend, Julie, I have been preparing the classroom for my incoming kindergartners. With their help, I was able to get things settled in my classroom and brighten up the space with new bulletin boards and interesting materials. I am truly grateful.

Unbidden Reflections

Last year, I was in these back-to-school training sessions when I got the call from the doctor’s office confirming I was ill–although the exact cause was still unknown. The simple reality of being back in the same place and at the same time of the year brought a wave of unexpected emotion that I haven’t quite shaken yet. However, I am reminding myself I am healthy and getting that phone call was the best thing that could have happened because it resulted in the cancer being found in time to be successfully and fairly easily treated. I am enormously grateful!

These districtwide meetings mean I see people I haven’t seen in ages. Since I was back to work for such a short time at the end of the school year, even people I see regularly may not have seen me back at work. So, it was heartwarming to have people make a special effort to greet me and let me know they were happy to see me back and looking well. Honestly, I still struggle with how to respond when people ask me about my weight loss or other aspects of my appearance. One lovely colleague commented on my lighter weight and asked me what program I had followed. I quietly leaned over and told her I had had cancer. Her shocked, but compassionate response made me feel terrible for springing the news so baldly and without preamble. However, I have yet to find a mendacious or glib answer to substitute for direct questions. If any of you have suggestions, I would welcome some helpful ideas.

New Beginnings

Being at a new school and different grade level rounds out the season of new beginnings I am experiencing. I look forward to meeting new colleagues and my young students next week. I know the future holds challenges and joys, but I look forward to meeting them head on.

Gaining Closure

On Monday, I wrapped up summer school and Wednesday brought the end of the Living Strong, Living Well (LSLW) program. Both programs helped me grow in very different ways, but came to a bittersweet close.

Over the summer, I enjoyed the challenge of teaching English learners and will continue to implement strategies I used to teach these students. I had a sweet class and will miss them as well as the teachers I came to know through the program.

Similarly, Living Strong, Living Well signaled an end regularly scheduled exercise and ongoing interaction with a small core group of individuals whose constancy and kindness made going to the gym enjoyable and important. I will miss seeing and working out with them on a regular basis, but am pleased to have exchanged contact information so we do not lose touch.

The LSLW end of program testing showed the benefits of my regular exercise and weight training. I showed improvement in strength, endurance, and balance. My speed did not show improvement, but it was not an issue that had raised concern. I am happy to be in the best physical shape of my adult life. And, gym culture and etiquette is no longer a mystery to me. As my summer drew to a close and I was swamped with setting up a new classroom, finishing up summer school responsibilities, and maintaining household chores, I realized how much more energy I had this summer than last and how thankful I am to be able to soldier on without becoming ill or having to take naps every afternoon.

Now that the program has ended and I am back to work, I have to figure out how to maintain these positive habits so that I continue to benefit from good health and fitness, while improving my chances of avoiding a recurrence of cancer. Any suggestions for how to establish and maintain balance so that I can fit work, exercise, meal preparation, and household chores into my schedule? From where I sit right now, it seems almost unattainable. I gladly welcome your suggestions.

 

 

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!

Two Months Post Chemo and Still Surprised

Two Months Post Chemo and Still Surprised

Two months post chemo and still surprised by fatigue and things that trigger emotions.  Even though I have resumed normal activities and am going about life as usual. I have been keeping a pretty steady pace and for the most part have been fine. After going back to work, I had some challenges readjusting to being back in a world that looked the same, but had changed. But, I made it and was glad I had gone back for the end of the year.

Now with school out, I have been filling my days with travel, packing up my classroom to move schools, transporting things to the new school site or to be stored, reconnecting with friends, and exercise. I have been feeling good and enjoying this new phase of life. However, I quickly forget that just over two months ago, I was a chemo patient.

My fatigue doesn’t seem to grip me constantly, so I can keep a pretty full schedule for awhile. Then suddenly, I find myself unable to deal with the emotions that accompany the normal stresses in life and realize I am tired and in need of a nap or a long night of sleep. The good news is that it is exactly that simple, so why can’t I remember this simple fact?

Triggers

A cancer diagnosis comes with an element of fear that takes time to overcome. Occasionally, that fear pops up out of the blue, but more often I find that it is triggered by treatment related issues or circumstances. For example, this week I had to schedule follow up testing for the end of the year. Both of the procedures I had to put on the calendar were tests I had in the hospital when the cancer was diagnosed. Naturally, scheduling those tests triggered feelings similar to those I felt the first time I had them since they caused me to remember and relive, at least on some level, the emotions around my diagnosis. However,  if I had been more rested, I think I would have faced them more quickly and put them to rest without having to weather such a tempest in a teapot.

Anniversaries

And, the anniversaries are looming larger on my calendar. The anniversary of feeling sick, learning I was ill (on my birthday, no less!) yet not knowing the cause, then being told I had cancer one day and having surgery to remove the tumor the next. I anticipate a certain amount of emotion as these dates approach, but I know that they will pass and I will be fine. They are just dates.

Recurrence

Recently I had the chance to share with someone who asked me if I feared a recurrence that I do not expect the cancer to return. I am striving to live my life to the fullest, while doing everything I can to live a healthy, anti-cancer life. But, it could still come back. I couldn’t prevent cancer the first time, so I know I can’t prevent it from coming back, either. What I can do is make the most of my life. Do what is important and let go of the small, insignificant things that pop up that really do not matter, but can quickly steal my joy, time, and attention, if I let them. I am doing my best to not let them! It is easier said than done, but I am finding the effort worthwhile.

Why Am I Surprised?

While I do not know the answer to why I am surprised by fatigue and the impact fatigue has on my emotions, I do know I am planning to make rest a priority and to find ways to remind myself that it will take time, more than I realize, to regain my stamina for the everyday pace of life. Taking a nap or sleeping an unusual number of hours some nights is exactly what I need in order to keep up with my day in and out activities. Hopefully, this will begin to come naturally and I will not reach the point that I am stressed and emotional over insignificant things.

Any suggestions for other ways I can be mindful of pacing myself and getting enough rest?

15 Chemotherapy Skills That Will Never Go on My Résumé

15 Chemotherapy Skills That Will Never Go on My Résumé

When I was first diagnosed with cancer, I began learning all I could about the disease, what it meant for my life, and how I could help in the process of returning to full health. This began my accumulation of 15 chemotherapy skills that will never go on my résumé. At first, I scoured the internet, especially sites like The American Cancer Society, The Mayo Clinic, Livestrong, The National Institute of Health National Cancer Institute, and even found helpful articles on Pinterest. During meetings, appointments, and phone conversations, I began taking copious notes in a dedicated cancer notebook on what was said by the surgeon, the physician assistant, the oncology nurse who facilitates a support group, the R.N. who serves as case manager through my health insurance, the social worker at Cancer CAREpoint, billing departments, health insurance customer service representatives, my pastor, or my knowledgeable and experienced oncologist . The ability to learn and implement my new knowledge has become an important skill to returning to complete health.

Through it all, I have gained more information than I ever thought I would need about health, the human body, and cancer. This has often been gained with my own body the subject, which has forced me to develop skills for discussing delicate or personal subjects with decorum, while being perfectly candid. Sidestepping important issues can be detrimental to health–my health, and that simply isn’t an option for me. My quest to return to complete health has led me into situations that have taught me other skills.

Other Chemotherapy Skills That Will Never Go on My Résumé

Being able to clamp or unclamp an IV line becomes critical if the pump malfunctions. Stopping the flow of the medication or checking to see if a line was inadvertently clamped is pretty helpful to know in case of other emergencies, too. Unfortunately, I learned by firsthand experience that pumps do malfunction. Which brings me to my next newly acquired skill.

Troubleshooting a chemotherapy pump while on the phone with a customer service representative can be a challenge. The pump is set by the nurses in the oncology practice to deliver chemotherapy at a certain rate. While the nurses have access to wide function of the pump, patients can only stop or restart the pump. That way, delivery of the chemotherapy cannot be tweaked by accidental pushing of buttons while the patient is at home sleeping or doing other everyday tasks. While I do not know about all chemo regimens, I know there is a specific rate at which my chemotherapy drugs are administered and it is unwise to mess with it. Therefore, the button blocking function is a fantastic thing.

That is until your pump starts repeatedly alarming at 9 o’clock at night and you have to call the pump company’s customer service line to resolve the issue. Then, they tell you how to sidestep the button blocking function to get some relief from the sleep robbing noise of the pump. Of course, they also make sure the button blocking feature is reactivated before letting you off of the phone. As you may know from personal experience, talking technology in the wee small hours with someone who knows an infinite amount of information about the technology in question can be somewhat of an exercise in careful listening and following directions. We still couldn’t solve the problem, but we tried.

Being frank with my oncologist about which chemotherapy infusion room I prefer. Infusion day is several hours long, so the atmosphere of the room can impact the level of patient comfort. As a reflective introvert, I found the larger infusion room just inside the practice door and across from the scheduling station to be noisy and lacking privacy because every single patient walks by the door on the way to an examining room. And, the discussions around the schedulers’ desk are sometimes often, but almost always audible in the larger room. So, voicing my preference for the room in the back, which is smaller and literally the last door accessible in the practice, became necessary. Nobody passes the room going anywhere else in the office. People literally have to purposefully walk to that room. As a result, little outside noise filters in.

Packing a chemo bag has become a time-consuming art. Over time, my enormous bag has come to contain all manner of helpful items such as those  mentioned in my earlier post What Should Go in My Chemo Bag. Finding and packing healthful but nausea proof snacks to munch while passing four to five hours in the chemotherapy infusion room can be challenging, but oh so crucial to a good chemo day.

Weirdly Humorous Chemotherapy Skills That Will Never Go on My Résumé

Describing bodily functions with a straight face has become a regular exercise within the confines of the surgeon’s or oncologist’s examining rooms. No topic is taboo and no question is exempt from being answered.

Putting Emla Cream over my port site on infusion day without getting it on my clothes before covering it with Press’n Seal or numbing my fingers in the process has become one of my greatest accomplishments. One day I forgot to put on the Emla Cream at home before heading to chemo and of course that was the day the oncology nurse used the wrong length needle and had to stick my chest twice before being able to set up my infusion. I have not forgotten the cream again and I could probably guarantee that I never will. It was not fun. Not fun at all.

Who knew that exposing my mediport site in preparation for an infusion in a well-populated infusion room without modesty curtains would eventually become a matter of fact and devoid of undue mortification? There still may be a bit on occasion, but somehow I have learned it can be borne. Those of you who were breastfeeding mothers had an advantage over me, but I now consider myself quite experienced. My question to all of you experienced mothers is if the previous state of modesty ever comes back because I am finding it a bit harder to remember what the big deal was.

Wearing a chemotherapy pump as a fanny pack without feeling like I am suffering fashion suicide didn’t take long at all. As a matter of fact, it only took one time knocking the pump on the floor with the IV tubing yanking on the bandage covering the inch long needle connected to the mediport site in my shoulder before I decided to go the fanny pack route. I would choose painlessness over fashion faux pas any day!

Discerning if my oncologist is being  serious or humorous. He is such a kind and knowledgeable doctor that I trust him implicitly to tell me the truth according to current medical research. We are both so serious about cancer and me getting well that honestly, I had to ask him to smile when he joked so I would know he was kidding. Now, I am perfectly clear about when he is joking–and it wasn’t as often as I previously thought!

Using the restroom while the mediport is connected to medications hanging on an IV pole without 15 Chemotherapy Skills That Will Never Go on My Résumégetting turned around, tangled up, or tripping on the tubes or IV pump power cable can be tricky at first. My chemotherapy is given in liquid form, so after an hour or two of liquids seeping into the body, it becomes necessary to use the necessary. Trips to the restroom as a chemo newcomer became lessons in problem solving and Houdini worthy escape acts. After awhile, I learned to dance with the pole, making sure it mostly stayed on my left side and if I had to switch sides how to do so without tangling everything up around me. The importance of keeping the lines and cables securely fastened also became clear rather quickly.

Patient to Patient Chemotherapy Skills That Will Never Go on My Résumé

Learning when to be a quiet listener and when to share what has helped me. No two people experience the same stress with a cancer diagnosis or impact of cancer on their lives. Each detour is different because each patient is unique and the disease attacking their healthy cells is unique to them. So, sometimes listening and validating the fear and frustration is just as important as later sharing that according to recent medical research, using a baking soda rinse is the most effective way of dealing with treatment related mouth sores .

Having empathy during a phone conversation with someone who is vomiting on the other end without getting sick myself.

Sharing frustrations and then moving beyond. We all have frustrations, stress, or doubts and with an ongoing health condition sometimes they can mount up. It is helpful to have friends who recognize and acknowledge those feelings without letting you send out invitations to a pity party. Just hearing someone else say they have gone through the same thing basically neutralizes the temptation to linger in those low places we can all walk into at times.

Being a friend to someone who is wrestling with metastatic disease is the skill I probably least desired to gain. I wish all of the patients I have met would successfully defeat this horrible disease. In the past, I felt so helpless and inadequate to condole with the suffering. Instead of avoiding them, I find myself drawn to their faith, hope, strength and tenacity to live. They challenge me to “live to live and not live to die” because I see them using everything within them to do exactly that: to live.

One friend in particular has challenged me by her unwavering faith in God. She has inspired and encouraged me when we know that for her, cancer will become her ultimate journey, while for me it is simply a detour. Her implicit faith in God’s goodness and faithfulness carries her through the bad days, and a phone conversation with a listening friend can help a little, too. It doesn’t solve our cancer woes, but somehow it resolves quite a lot of life’s issues. And that makes living truly wonderful!

Chemotherapy Skills That Will Never Go on My Résumé

These 15 chemotherapy skills that will never go on my résumé , but that have become crucial in my life may never help me gain a better salary or a less stressful job. However, they have become part of who I am and how I go about life. In different ways, these skills will stick with me and help me be a better daughter, sister, aunt, friend, colleague, and who knows what else. I look forward to the journey of finding out!

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.

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