In the time that has elapsed since my last post-surgery blog in late December, an interesting post-op complication lingers. A few days after surgery, I developed a mild form of jaundice, which has stayed with me these past five weeks.
It’s a medical mystery, currently under review by an array of doctors. We have ruled out pre/post-surgery drug interactions, and a reaction to anesthetic from the two surgeries I’ve had since spring 2010. The only clue as to what is going on with my body is an elevated liver enzyme, without a known cause.
As a recent cancer survivor, I undergo quarterly medical check-ups and blood work, which includes testing for white blood cell counts, cancer markers, hemoglobin levels, liver enzymes, thyroid and bilirubin counts.
In September, October (pre-op prep), and December, all of these levels were normal. Between first noticing jaundice, seeing my doctor the week of Christmas, and then again two weeks ago, one liver enzyme (alkaline phosphatase) climbed to four to eight times the acceptable range. There are no other irregularities with my most recent blood work results.
I have no pain, swelling, or loss of appetite. I am tired, but am still recovering from major surgery. I am somewhat fatigued all the time, as my cancer drug Tamoxifen is a form of chemo, and fatigue is a side effect.
My medical team does not know why this jaundice is occurring, as the symptoms are unusual. My doctors have put on their detective hats, and are trying to solve this medical mystery.
The diagnosis of jaundice is done by the elimination of possible contributing factors. We know that drugs and anesthetic don’t appear to be the problem. I did not have a blood transfusion during the last surgery. Other potential causes could be hepatitis, a blocked bile duct, inflammation, cancer, or an unknown cause. Because of my cancer history, the medical team is being prudent in further testing as breast cancer can return to my other breast, bones, lungs, liver or brain.
Discussions have taken place between my family doctor and surgeons, anesthetists, and my medical oncologist. The oncologist and family doctor have determined that I need to undergo more blood work tests, a CT scan, a bone scan, and a referral to a hepatologist (liver specialist) to see what may be triggering this problem. It feels like the suspicion of cancer and diagnostic screening all over again.
My nurse educator tells me that every time something suspicious arises with my health, the fear of cancer returning is a normal reaction that all cancer survivors go through as part of their journey with this disease. As my surgical oncologist once said, “women with a breast cancer history live the rest of their lives with the feeling of a guillotine hanging over their heads.“
The stress levels are creeping up. This time of anxiety is so familiar. I am on another roller coaster ride in living with a cancer history. I am still off work, and am trying to stay calm and busy with mindless home projects to distract my worried thoughts. It is a difficult topic to talk about…
I am resolved to work through this medical mystery one day at a time and trust that all will be well. I will do so with Strength, Courage, and Determination.
In a few short weeks, it will be two years since I started my journey as a breast cancer patient. It has been a life experience I could have never imagined, had I not been diagnosed with the disease.
Last year at this time, I was winding down my radiation treatments as part of my ongoing battle to fight breast cancer. I was looking forward to moving on with my life. I started resuming activities like going to the gym for daily workouts starting on January 1, going through rehab to regain the use of my body post-treatment, and eventually returning to work this past fall.
In January 2011, I began taking Tamoxifen, a cancer drug that is used to block the production of estrogen, which forms cancer cells. I was hopeful that my body would accept the drug without complications. It did for a short while until March, when I started to have complications that I should not have had with the drug.
My doctor and I monitored the symptoms for a few months. I underwent a gamut of diagnostic tests and watched to see what would develop. In September, another complication surfaced, and a specialist was consulted. A decision was made to act quickly to treat the complication, so that I could continue to use Tamoxifen. I was scheduled for major surgery to remove organs at risk in developing cancer.
The surgery took place in early December. Even though, I had been in excellent physical health prior to the procedure, the bounce back has been brutal. It has been a trying time physically, mentally, and emotionally. And like the earlier treatments I had, this one too posed rare complications, which I am being tested for, and await results for treatment.
This latest cancer prevention treatment has been a setback and a disruption—particularly because I finally returned to work in early October, ending the last piece of unfinished business in my life post-treatment. I hope to “begin again” at work by the end of January.
As frustrating as this is, a medical mentor of mine, who is a cancer survivor, comforted me a few weeks ago. “Once you’re a cancer patient, you are always a cancer patient. It doesn’t end. This is a part of living with the disease. Your life will never be the same, this is your new normal.”
This latest treatment, coupled with the news these past two months that three friends of mine are in active treatment for breast cancer, is yet another reminder that the lives we live are often take for granted. As a breast cancer survivor, who is now journeying with friends through their treatments, I am reminded again how fragile life is.
The gift of life—my second gift of life, compels me to keep fighting and continue living this new normal life, with Strength, Courage, and Determination.
Cancer and the Return to Work: The World of Work and I “Ain’t What We Used to Be”
Three months ago I wrote my last blog, which seems like an eternity. Since August 15, my world has changed considerably. Work has entered into it.
I spent the last part of August and September preparing for my return to work. Work, like life, does not stand still. It changes, as life changes. My life, and my work-world have changed.
What’s different? Everything.
Returning to work feels like I have been hired as a new staff in a job I have held for over 10 years. The job I left has changed in the 18 months I was away. The way the work has been done has changed. The people I worked with have changed. The organization has changed. My manager has changed. My reporting structure has changed. But much more noticeably, I have changed because of my cancer experience.
My energy levels are far lower than they were before I had cancer. I tire more easily. Mentally, I am more taxed at the end of the workday because treatments have left me with some cognitive impairment, which forces me to have to work harder to do my job. I cannot multi-task anymore, and it takes me longer to complete a task. My executive function is also affected.
The large volume of work I once handled prior to cancer is a thing of the past. I simply cannot work that hard anymore. This comes as a big “reality check” for me, the over-working, over-achieving perfectionist.
I now have to admit that I will never be able to handle work the way I did before my cancer diagnosis. This last piece of returning to a life after cancer—the return to work, comes with another area of grieving I have to overcome. This grieving is similar to other aspects of my life that I have had to work through in living with cancer. I have to bid good-bye to my past as I usher in the “new” present reality.
In returning to work, I live with a new fatigue I have never experienced before. It is similar, but different to the fatigue I had with chemo. This one just leaves me feeling mentally exhausted and light-headed every night. It’s difficult to explain, but fellow cancer survivors will understand what I mean as many of cancer pals also live with this fatigue in their return to work.
This is all part of the cancer journey and the acceptance of a “new normal” life after cancer treatments. I can now begin to understand what other cancer patients before me have said; life after cancer is different.
But, I have survived and that’s all that matters. Every day that I wake up and greet the morn, I am grateful for this gift of a second life. It is precious.
There are no bad days in living with cancer, after coming face-to face with the possibility of death. Each day, I rise and meet the challenges that come with it and do so with Strength, Courage, and Determination.
EDITOR'S NOTE:
I am currently writing a new blog entry, which is long overdue since my last posting in late summer. My recent return to full-time work and cancer patient advocacy volunteerism has kept me steadily busy since early fall. Watch for a new blog update from me in the next few days.
The following is a guest post from cancer survivor David Haas who is a reader of my blog, and a writer of his own cancer blog. David’s sentiments are similar to mine, as I am a member of a breast cancer support group. The advice in David’s column is helpful to cancer patients and their caregivers.
Cancer Support Groups Can Really Help
By David Haas
Mesothelioma Cancer Alliance Guest Blogger -
http://www.mesothelioma.com/blog/
Anyone who has cancer, who is in remission or is going through cancer treatments, understands how traumatic and stressful this can be. Many people in these situations are afraid and confused about what to expect. While their friends and family are empathetic and loving, these people do not necessarily provide the information that the cancer survivor is seeking. The devastating effects of cancer often leave the people it strikes, at a loss about how to deal with the tremendous stress that these conditions cause. To make matters even worse, studies have shown that stress has a pronounced effect on how cancerous tumors grow and spread.
The American Institute of Stress indicates that people who get the emotional support they need have far less stress and are able to heal more rapidly. Less stress means a better ability to deal with the cancer. Emotional support can be from compassionates friends, family members, a doctor or from a patient advocacy or cancer support group. However, no one truly understands the devastating effects of cancer better than other people who are experiencing or have experienced the disease themselves. This is why cancer support groups are so highly recommended.
There are all kinds of cancer survivor networks on the Internet. These groups can be especially helpful if someone is experiencing a particular effect of a treatment that prevents him or her from leaving home. One need not be incapacitated to participate and enjoy online groups, however. Some people find it less stressful to use this modality to communicate.
Support groups that exist outside the Internet can help any cancer survivor gain knowledge about how to fight his or her disease, whether it manifests itself as mesothelioma, breast cancer, leukemia, or any other type of cancer. They can teach members about the negative (or positive) effects of the various treatments, and advocate for high quality health care.
Some support groups are peer moderated. This means that they are not run by members of the medical community, but rather are run by other cancer survivors who gather together to talk about their personal experiences and any new information they might have learned about.
There are also professionally moderated cancer support groups that are commonly found through hospitals. These are often run by doctors or psychologists. Both types of groups offer encouragement and psychological support, valuable information and opinions and direct accounts of personal experience, but most importantly, the opportunity for cancer survivors to experience a human connection and camaraderie.
Others have told me that the last piece of unfinished business in a life changed by cancer is returning to work. At 52, I am too young to retire and do enjoy working. Fortunately, I am going back to the position I left before cancer treatments. It is a time of eagerness and anxiety.
My gradual return to work will take place after the upcoming Labour Day weekend. Returning to work is the final frontier of assimilation in my “new normal” life after cancer. When I return to my job, it will have been 18 months since I went on sick leave.
A year and a half is a long time to be away from work. The workplace has changed, work colleagues have changed, my supervisor has changed, I have changed, and what is important to me in life has changed. Change remains a constant in the fluid world of work and life.
Like other changes I have made in my life to reduce the risk of a cancer recurrence, such as losing weight to lower the fat content in my body, adjusting my diet to a “super healthy” one, striving for 10,000 steps daily, exercising a minimum of five times per week, and learning how to reduce stress in my life, I know that paid work will also undergo change.
I will have to function differently in my job, as I am returning a changed person physically and mentally. My body mechanics do not work the same as they did pre-mastectomy.
I am learning to live with the discomfort, numbness, and limitations of cut muscles, nerves, and tissues. Tissues shortened from surgery and shrunken from radiation, have affected the functioning of my upper body, neck, and shoulder on the dominant side. Simple tasks like sitting at a computer terminal and using a mouse can cause strain and body fatigue more easily than in the past.
I tire much more quickly than I did before cancer. My hands and feet can get very cold and have difficulty warming up even in the heat of summer. My cognition, while improving after memory retraining classes, is not what it was before cancer treatments. Multi-tasking is still difficult, which by necessity, has taught me to slow down, work on tasks one at a time, and be more patient and compassionate with myself and my limitations.
Despite all of this, I am grateful for my life every morning that I awake. The treatment side effects are minor sacrifices to survive a cancer diagnosis.
Cancer has transformed my life in a multitude of ways—mentally, physically, emotionally, and spiritually. It has been a journey of blessings and burdens, which I now am starting to see as gifts that have come into my life.
I anticipate that there will be more blessings and burdens when I return to work. Like all other aspects of my life in living with a cancer diagnosis, I will approach my job with Strength, Courage, and Determination.
Reflecting on the last 16 months of being a breast cancer patient, I can say that the disease has changed my life in ways I had never imagined. Once one has lived with cancer, fought it, and won, there is little else in life that can scare you. The experience of being face-to-face with death, and living through it, makes rising every morning a sacred gift. As a cancer survivor now in remission, I am grateful for my life.
The experience has also gifted me with boldness that I did not possess pre-cancer. This boldness is evolving to being a patient advocate to speak on behalf of other cancer patients who have no voice in navigating the medical system that treats them.
As a cancer patient, one receives numerous medical pamphlets that advise you to be the lead member of your cancer care team. Oncology doctors and nurses look to their patients for information and clues as to how they are handling their treatment. The saying: “they don’t know what you don’t know unless you tell them,” applies throughout all phases of cancer treatment.
I took ownership of being the team leader for my care, led my medical team (some were assigned to me, some where chosen by me) for the duration of treatment, and continue to take the lead in my post treatment follow-up appointments.
When I was diagnosed, I was doggedly determined to fight this dreadful disease proactively so that I could live. My daily attitude was a defensive one, with a mantra of “cancer, how dare you attack me.” Visually, my companion image was that of a pair of boxing gloves that I imagined wearing to knock down attacking cancer cells. The mantra, the boxing glove image, and the advice from the patient pamphlets to lead my medical team formed my fighting attitude.
However, many other cancer patients do not take this approach, as they do not know how to maneuver through the complex health care system.
They do not know what questions to ask, or what kind of information they need to share with their medical caregivers. Learned medical professionals who are treating them may intimidate them. They may have an intellectual disability. They may be very young or elderly. They may not have a command of English, which is the language used in patient communications. Because of these circumstances, many cancer patients feel they have no voice in raising their concerns with medical staff that care for them.
Cancer has been the most difficult life challenge I have ever had to overcome. Even though I was proactive in managing my disease and its treatment, there were times when I felt I had no voice in how my illness was being handled. The cancer treatment organization was exemplary in my care; emergency wards in local hospitals were not.
Be the Change You Want to See in The World
Inspired by Mahatma Gandhi’s expression: “You must be the change you want to see in the world,” the cancer experience has given me the opportunity to be a voice of change that cancer patients need to further improve their medical care. Herein are the opportunity and the challenge for me--to be the change I want to see in the world, at least in the local medical world of cancer treatment.
Those who know me will likely say that I am an aggressive female—driven, tenacious, stubborn, proactive, perfectionistic, passionate, articulate, and one who loves to conquer a challenge. These qualities are ones that are useful to invoke change in any forum.
As a former news reporter early in my career, possessing an inquiring mind was an important part of the job. When my career evolved to corporate public relations, I honed new skills as a problem solver. These two traits have served me well as a cancer patient in managing my treatment program in concert with an array of medical caregivers. These two traits are now guiding me in raising cancer patient concerns with medical professionals who treat them.
It has been said that cancer patients may not die from the disease, but from the complications that come from their treatment. This truism was part of my world when six times in eight months, I suffered life threatening cancer treatment complications.
There were several visits to hospital emergency wards during my cancer care. These visits were the scariest part of the treatment. Sitting in emergency as an acutely ill patient, I knew that I was being exposed to a plethora of germs all around me from other sick people in emergency. It was terrifying to know that I had virtually no immunity to fight infection due to low white blood counts, and that I was in a high risk, high contamination environment that offered no “exposure” protection for me.
One of the chemotherapy complications (neutropenia-fever, infection, and low white cell counts) resulted in a prolonged stay in emergency of 11 hours. My doctors told me more than once that when I was neutropenic, I should be seen within an hour of attending emergency, and that I should be masked and isolated from the general population. With my BN sister at my side monitoring my symptoms, we sat in emergency hoping and praying that my infection would not turn into sepsis (severe infection that spreads via the bloodstream), which could kill me if it was not treated promptly.
Because of the mishandling of my case in emergency, my cancer social worker encouraged me through the process of lodging a complaint with the cancer care treatment organization’s patient representative. In turn, the complaint was raised with the attended hospital’s patient representative.
I attended meetings with both parties to speak to the severity of the complaint. During one of the meetings, it came as a great surprise to my sister and I, to learn that local hospitals lacked a chemotherapy patient protocol when cancer patients come to emergency with chemotherapy complications. As “the voice” for other cancer patients in raising this concern, I am delighted to say that both medical organizations have spent the last seven months addressing and resolving the issues that arose with my case.
The two organizations have worked to develop an emergency treatment protocol for neutropenic chemotherapy patients at the hospital I attended. Chemo patients will now be assured that they will no longer have to endure the fear of possible sepsis as they wait in that hospital’s emergency ward. In time, it is hoped that the attended hospital’s (pilot) protocol will be refined and shared with other local hospitals, so that there is a consistency in the medical system in how hospitals handle chemotherapy patients when they come to emergency.
Recently, my social worker advised me that the neutropenia protocol at the hospital I attended has been enacted. She noted that one of her other breast cancer patients who had neutropenic complications in the last few weeks, went to the hospital I attended to be seen in emergency. She was triaged quickly, isolated, and seen within 15 minutes of arriving. I was overjoyed to hear this great news. Progress is being made to help other chemo patients in emergency in this one hospital. It is rewarding to know that I could be a positive “voice” of change for other cancer patients.
Both patient representatives and my doctor told me that I was lucky to survive four episodes of neutropenia. Out of my suffering came goodness. That’s grace.
Be the Change Continues
As a result of launching my complaint and having it resolved, I have been asked by the executive of the cancer treatment organization to provide feedback to them about my care with their organization and the healthcare system. The input will be used to make improvements in cancer patient care.
In addition to this, I have been asked to sit as a patient representative on a committee of medical professionals associated with the attended hospital, to provide feedback on improving patient care.
While I was undergoing treatment, there was a parallel in spiritual care neglect from my church’s ministry team. Facing potential death during that time, with no one to speak to on spiritual concerns, I sought console from the spiritual counselor at the cancer treatment organization. We have had many conversations about life and death, and have a good rapport between us. At her request, I will now be assisting with developing information for clergy who are seeking guidance in how to minister to cancer patients.
It appears that patient advocacy is my newest volunteer calling, and is one that I hope will help countless cancer patients and their families. This poem, read at a cancer patient workshop I recently attended, sums up how the disease is now becoming a positive force in my life:
“Until one is committed there is always hesitancy,
The chance to draw back, always ineffectiveness,
Concerning all acts of initiative and creation,
There is one elementary truth,
The ignorance of which kills countless ideas and splendid plans:
The moment one definitely commits oneself, then providence moves too.
All sorts of things occur to help that would never otherwise have occurred.
A whole stream of events issues from the decision,
Raising to one’s favour all manner of unforeseen accidents and meetings
And material assistance which no one could have dreamed
Would come their way
Whatever you can do, or dream you can, begin it.
Boldness has genius, power, and magic in it.”
Author Unknown
My cancer remission travels are taking me in new directions with a renewed sense of purpose and boldness. I will continue to advocate and be the voice of change for other cancer patients with Strength, Courage, and Determination.
My surgical oncologist, “Dr. Wonderful” personally called this afternoon to let me know that the biopsy results from my lumpectomy were in and the lump is benign! “Benign” is such a beautiful word to a cancer patient.
The load off my shoulders is immense. After over three weeks of waiting, worrying, and wondering if cancer returned, I must admit that the relief is indescribable. Tears, woo-hoos, hugs, and high-fives all around… My daughter Marissa says it’s the best birthday present she received today.
I will sleep well tonight.
Thanks to all of you who kept me in your thoughts and prayers. I am truly blessed to have so many people surrounding me with love in this cancer journey, or shall I say “cancer recovery.”
Each day of my life I fight to live cancer-free. I do so with strength, courage, and determination