Sure enough, I started experiencing episodes of break-through pain by later the next day. One that I never saw coming. By contrast, the resolution of newer MRI’s (3-T versus the standard 1.5T) are best at detecting small/subtle lesions or nerve injuries—so an MRI scan was scheduled for 6:30 pm Saturday. In early 2011, I was in good physical shape, about 30 pounds overweight, eating healthy and exercising regularly. In retrospect, the month of April was a blur. Depending on the outcome, I can consider continuing with the paclitaxel monotherapy or getting more aggressive by adding a second agent, such as carboplatin. As mentioned in a recent tweet, what’s been my biggest surprise since being diagnosed with terminal cancer? I took two acetaminophen, which brought the temperature down, and made an appointment the next afternoon to see my oncologist, Dr. David Pfister, and Nicole Leonhart, ANP, RN. In general, I felt worse that day, and by the evening my temperature jumped to 101.9 Fahrenheit. Maybe it’s just too hard to go back to sleep after finding myself once again tangled up in IV tubes connecting me to the fentanyl PCA. This past week is the first time that I can recall being forced into the basement to seek shelter from a tornado warning. I’ll provide an update around that time unless anything significant develops in the interim. In reading a retrospective review about bone metastases from squamous cell carcinoma of the head and neck (SCCHN), I was quite surprised by the accuracy of some key statistics. April 8, 2017 April 8, 2017 5 Comments. I’ve even been able to meet some of you. I think it’s because my oncology appointment is coming up and whenever I talk with my doctor, I feel like I’m on shaky ground. While many people believe that hospice care is only appropriate in the last days or weeks of life, it can be beneficial as much as 6 months before death is anticipated. An additional benefit is that some of the content may be a helpful resource for others dealing with head/neck cancer. Statistics show that the people who have the most live the longest.”—Reverend Larry Lorenzoni. Terminal cancer patient releases his first public service announcement (PSA) aimed at encouraging faster diagnosis of head and neck cancer. Hospice arrangements were coordinated with MSKCC, so I was sent home connected to a patient-controlled analgesia (PCA) pump allowing me to administer my own IV pain relief. All trademarks, service marks, trade names, trade dress, and product names appearing within are the property of their respective owners. My cough disappeared, so I was very confident that the inferior left hilar node decreased in size following SBRT. 51. i'd rather love life than hate cancer Sitting is among the most uncomfortable positions for my back at the moment. While monitoring the effects of the nerve block, I am also scheduling an appointment with Dr. Nancy Lee, my radiation oncologist at MSKCC. In some situations, a CT scan can detect abnormalities better than an MRI, including acute bleeding and bone fractures. This blog contains information and experiences to help cancer survivors on their cancer journeys. Placing my hand there, I could feel a solid lump just under my jawline that was about 3 centimeters in diameter (see Figure 1). Home; Blog; About; Contact; Breaking the news. Children going back to school – not going back to school – is it safe? On chemotherapy treatment day, I also receive an additional dose of steroids via IV as part of the premedication course. The content, the community, the safe space, this profound connection when listening from the heart; ALL of this complements my healing as a cancer survivor harmoniously. No estimate for when traffic would be allowed in and out of New York Penn Station again. Due to the immediate numbing effects of the local anesthetic, I was relatively pain-free after the nerve block procedure. Browse first … My heart beats a little faster and my head swirls like an accountant taking stock of my assets: Did I eat well? Adverse events associated with SBRT can include pneumonitis, cough, pain, esophagitis, and dermatitis. Welcome to my journey and my journal. Despite my extended treatment break and disease progression, I remain healthy enough to continue advocating for myself and others. Fortunately, cancer has not yet contacted my spinal cord. As I compose this post, I cannot get the 1985 song “Radioactive” by English rock band The Firm out of my mind. It was a beautiful day, and I came fully prepared with a tripod, lens filters, and additional camera equipment. The same article continued with guidance that “in the absence of overt signs of infection, a lateral neck mass is metastatic squamous cell carcinoma or lymphoma until proved otherwise.” The results made me nervous enough to reach for the phone and call our family physician for an appointment that day. Next week, we will meet with a physician at the Spine Clinic at Memorial Sloan-Kettering Cancer Center (MSKCC) to review the MRI scans and pain management options. However, such lymph nodes are often swollen, tender, and mobile. After reviewing a new chest x-ray, my medical team offered a differential diagnosis of radiation pneumonitis based on empirical evidence. The decline in cervical cancer from 1999 to 2015 is the continuation of a favorable trend since the 1960s when cervical-vaginal screening increased significantly as Americans endorsed the Pap test. In the absence of a fracture or cancer progression, other conditions could explain this new pain. Pricing. I made it through the majority of the MRI imaging procedure—before the point where the contrast agent would typically be administered (after approximately 20-minutes). When cancer spreads to the spine, it can replace your bones or compress your nerves, resulting in compression fractures, pain, and reduced blood supply to the spinal cord. I’m just SO darn lucky and blessed to have her by my side now. As appropriate, I could still opt to receive local palliative treatment, such as external radiation. It wasn’t exactly apparent to me, since I thought I had it all together, working in the cancer world and understanding, intimately, the cancer journey. Even better, my infusion was uneventful and started earlier than expected. We cover nutrition, exercise, and other topics. Was I true to my heart’s calling? This has been accompanied by mild swelling and numbness near the skin surface, which is coincidentally where radiation tattoos used to guide my prior spleen therapy can be seen. Consider what was known at the time: Pneumonia is a bacterial infection that inflames the air sacs in one or both lungs, but a subsequent CT scan and blood work didn’t confirm. For example, in recent years, there has been a slew of books authored by “expert patients.” Doctors, scientists, and writers who are reflecting on their departure and have sought to show us different, kinder ways of ending (Atul Gawande, Paul Kalanithi, etc.). Following radiation therapy to my spine, I developed a compression fracture likely due to the destruction of healthy bone from cancer. Similarly, cancer can induce cognitive impairment. Consider the plight of people living with Alzheimer’s disease (AD) and the impact of this awful condition on their caregivers. by Keri Lehmann, Master Cancer Coach; Co-Founder of The Cancer Journey Institute. Since late August, my daily pain went from a low of 5 at rest up to 11 with movement (“Up to eleven” coined in the 1984 movie This Is Spinal Tap). I would be remiss if I didn’t also acknowledge how important all of the happy birthday calls, texts, gifts, and social media posts were to me. My best guess was that it would be another thirty minutes before arriving at MSKCC—assuming no other delays. This confirmed Her2 positive and ER positive breast cancer. I thought I was having a good day, today! I’m also meeting with my oncologist to review recent CT scans showing growth in the pulmonary and thoracic nodes. Late last month, I experienced severe pain in my left hip/buttock that warranted a trip to the urgent care facility at Memorial Sloan-Kettering Cancer Center (MSKCC). Initially, I envisioned having a good quality of life for a few months during the treatment break before cancer came roaring back and then succumbing to the disease in approximately six months. Many patients should also avoid being treated by courses of antibiotics for weeks or months, as this causes a delay in referral to secondary care, generally to an ENT specialist. Continue reading →, I remember the first time I attended church during my chemo treatment receiving compliments from friends on how great I looked, how I radiated! As my strength, energy, taste, and hair returned, however, I began to appreciate “quality” of life over the “quantity” of life potentially afforded by toxic treatments. Perhaps it’s from the stimulative effects of the steroid medication. Continue reading →, by Shariann Tom, Master Cancer Coach; Founder & President. What about all the stuff I wanted to do?! Accordingly, my medical team has put me back down to 20mg of prednisone daily with the goal of finding alternatives for pain management, such as gabapentin. It may be a simple x-ray or a noisy MRI. Of course, it wouldn’t be a commute between home and NYC without experiencing some significant delay. Unfortunately, that was the only good news contained in the CT scan results. I had a similar experience this week following my second treatment with paclitaxel yesterday at Memorial Sloan-Kettering Cancer Center (MSKCC). Every time I think about it, I can feel the anxiety rise. Making matters worse, I still don’t look like a terminal cancer patient. They can also exhibit abnormal redness of the surrounding skin and feel warm to the touch. Towards the end of September, I’ll have another CT scan to see how the radiated (and non-radiated) tumors responded to the SBRT. If you have had cancer or just discovered you have cancer, you know it is incredibly overwhelming. I was already taking 10mg of OxyContin and 20mg of prednisone daily to help manage the spinal metastases and radiation pneumonitis/fibrosis, the latter of which was increased to 30mg to potentially help with the new rib pain. Having Lorie hold one end of the rope while steering the wheelchair with the other hand was equally dangerous. With random movement, a sharp, electric-like pain radiated down my left leg. Being in the prone position for the entire procedure; however, it was difficult to reach under my body and confirm exactly which areas of my chest were numb. Humphrey only wanted to play with other pups he met in the park and who could blame him? From 1999–2015, cervical cancer incidence rates decreased by 1.6% per year on average, going from 13,125 in 1999 to 11,788 in 2015. Accordingly, Dr. Pfister proposed starting with paclitaxel alone for a cycle of treatment (approximately one month). This is my humble attempt to share what I have done and learned along the way. I deeply regretted not requesting a dose of Ativan® (lorazepam) before the MRI. ~ Richard Figure 1: Adapted from CDC’s Morbidity and Mortality Weekly Report (MMWR) / August 24, 2018 / 67(33);918–924. He wanted to live his life as the strong, talented, passionate, loving man he was, not as a cancer patient. Had an ultrasound and then biopsy. I have been irritable as of late, which is likely a side-effect of stress, steroids, and other medications more so than disease progression. This time, due to a derailed train blocking one of only two open tunnels to the city. The AD patient may fail to recognize close relatives, which can lead to irritability, outbursts of unpremeditated aggression, or resistance to caregiving. The following is based on my experience as a hospice volunteer, and caregiver to my mom at her end of life. New locations also appeared, including my spine. Similar to how the hip/buttock/leg pain I’m experiencing is referred from cancer invasion of the L5 vertebrae. Next time we needed to enlist the help of a third person to handle Humphrey or leave him at home. I quickly came across one medical journal article that contained a startling statistic: More than 75% of lateral (side) neck masses in patients older than 40 years are caused by malignant tumors. My wife came to visit me by surprise! All of this inspires me to keep publishing, to put myself out there, with the hope that my words might be making a difference to somebody. In my prior post, I discussed a worsening cough and recommendation from my oncologist, Dr. David Pfister at Memorial Sloan-Kettering Cancer Center (MSKCC), to consider stereotactic body radiation therapy or SBRT. But most of my cognitive impairment is mild and relegated to simply forgetting something I said or did. While my breathing conditions deteriorated, a wheelchair had been dropped off on Saturday. I knew that I couldn’t hold still long enough to complete the CT scan. It is one thing to hear from family and friends, but some messages from people I’ve never met in person were also truly lovely and brought a smile to my face. Through the fantastic generosity of family and friends, along with a lot of effort from Lorie, amazingly everything went smoothly. It’s a common misperception that the human papillomavirus (HPV) vaccine is intended only for females. There was an inner voice that was saying, “You can’t be grieving or feeling loss, she’s right here next to you.” Continue reading →, My next scan is just around the corner. The good news is that radiation mainly addressed the pain originating from my spine. Fortunately, it would take much, much more to impact my ability to recall that for the past 27 years I’ve been the luckiest man alive. If not, we can decide whether or not to reintroduce carboplatin in a subsequent cycle. Surgery, chemo and radiation. I couldn’t do much at all yesterday concerning activity, but the symptoms usually resolve within a few days, and today (Friday) I’m already feeling better. My head feels like a ping pong is going back and forth. Debuting for the first time this year, patient advocates, industry leaders, and BIO experts discuss emerging trends live from the convention floor in Philadelphia. Therefore, no — I will not be receiving further treatment, such as chemotherapy, radiation, or participating in clinical trials. Lying in bed this morning, I could hear birds chirping outside as the first light of day crept over the horizon. GI organs that have classically developed radiation-induced toxicity include the small bowel, liver & biliary system, esophagus, and rectum. Based on the latest CT scan, my medical oncologist, Dr. David Pfister, and Nicole Leonhart, ANP, RN, with Memorial Sloan-Kettering Cancer Center (MSKCC) feel that there is a very real component of my disease that remains sensitive to paclitaxel. It’s no wonder that skeletal metastases remain one of the more debilitating problems for cancer patients. So far, the SBRT “experience” has been exactly as billed. But if I had to, I wouldn’t change a thing. Beth's Cancer Journey. Since I was scheduled to travel to MSKCC for the CT scan, I asked my treatment team if an MRI of my spine made sense to plan for that same day. With regard to cancer that has spread to my spine/bone, it is difficult to distinguish between cancer progression (bad) or treatment effect/healing from prior radiation treatment (good) on a CT image. The highlight was actually staying awake until midnight to welcome the New Year. What could go wrong? Lately, however, my focus has shifted to managing various debilitating side effects of cancer and its treatment. We even started my birthday celebration a little early last night. Accordingly, my nurse Linda suggested switching from Ativan (lorazepam) to Klonopin (clonazepam). Continue reading →, by Keri Lehmann, Master Cancer Coach; Co-Founder of The Cancer Journey, This morning I woke up feeling enthusiastic about the day ahead of me. No one has mastered the art of happiness quite like Humphrey, our Golden Retriever. What do I believe? Bone is the third most common site for the spread of cancer, with half or more of patients diagnosed with cancer experiencing bone pain. More comforting to her, however, are the weekly visits from hospice to monitor my vitals, change the bandage around my patient-controlled analgesia (PCA) device, and adjust my various medications as appropriate. No worries, we still had plenty of time. The severe pain that plagued me during this period is due to the progression of cancer in my spine, which is managed through a combination of steroids and oral/IV narcotics. Lying down on my right side made the pain better, but sitting or climbing stairs was unbearable. Regretfully, I second-guessed my request for an MRI of my spine due to the modest pain improvement and canceled that appointment after consulting with my treatment team. In this regard, metals such as used in electronic medical devices, piercings, and tattoos, have the potential to cause severe burns or other harm within an MR imaging environment. I stood during most of the ride since it was a more comfortable position. A patient may have trouble getting into the holiday spirit because of physical illness or fatigue. This is diagnostic, as it helps the physician determine whether or not they are targeting the right nerves in “real time”. Zometa used to both prevent and treat skeletal complications in patients with bone metastases due to all solid tumors. To be continued…, “Arriving at my hotel room in Princeton a short while later, I wept and wept for what I saw that day and all the people who had died, a final tally I didn’t yet know. After the injection, the nerve is no longer able to relay pain—so the discomfort is relieved for some time. Indeed, nothing to stand in the way of some upcoming speaking opportunities or tomorrow’s quiet birthday celebration with Lorie and the girls (and our small petting zoo). Until then, I’m continuing my human papillomavirus (HPV) awareness activities and encouraging vaccination of preteen boys and girls to help prevent six cancers linked to HPV. Sign up for new post alerts here using your email address to be notified each time there is a new blog entry. Dealing with severe pain for weeks, I was ecstatic to learn that he could perform the nerve block immediately. One perspective is, another beautiful life lost to cancer. Fortunately, the majority of my issues have been manageable with palliative treatment thus far. Figure 1: Michael Becker receiving chemotherapy at MSKCC on 1/29/19. When the local forecast called for warm and dry conditions over the weekend, I couldn’t help but beg Lorie to go for a walk at Tyler State Park. Lorie stopped me for a quick kiss before I disappeared into the men’s locker room at MSKCC to change clothes. Completing the steroid regimen and two weeks of physical therapy, I was feeling only marginally better. Compared with prior imaging studies from September/October 2018, the latest MRI showed additional metastases (the spread of cancer) along with both increased and new bone lesions, including a left rib lesion and bilateral iliac bone lesions. To prevent HPV-related cancers and other ailments, HPV vaccination was added to the routine immunization program for US females in 2006 and the program for US males in 2011. After being told there was at least an hour wait for alternate transportation, we returned to the train and awaited more information. The latest new issue to surface is a sharp, stabbing pain near the inferior border of my left lung (Figure 2). It may sound morbid, but my first thought was “at least now I won’t die in my forties.” Making it to 50 somehow sounds better. Navigating the Cancer Journey When Jane Para was diagnosed with breast cancer, Nurse Navigator Angela Acevedo became her “advocate, guide and support”, from the initial meeting in the doctor’s office to the final chemotherapy treatment. I was disappointed. During this same period, oropharyngeal SCC incidence rates increased by 2.7% per year on average among men, more than doubling from 6,966 in 1999 to 15,479 in 2015.
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