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.). The good news is that with adequate steroid treatment, most patients achieve complete recovery from their symptoms. I was told pain relief could take a few days, for which I anxiously awaited. At my worst in the summer of 2017, Lorie and I were convinced that I’d never even see my 49th birthday. But it strikes me that, that is precisely why he kept his journey private. In particular, I’m not claustrophobic and haven’t experienced any significant anxiety while being stuck in a tube for 30-40 minutes. Right, @23aloha? After the injection, the nerve is no longer able to relay pain—so the discomfort is relieved for some time. Of particular note, there is a new T8 left paravertebral lesion. The latest new issue to surface is a sharp, stabbing pain near the inferior border of my left lung (Figure 2). A decision so complex that it couldn’t be adequately addressed in a blog post. I felt a deep sense of disappointment and sadness about having to let go of my vision of deep connection and bold adventure. A 3.0T MRI provides higher clarity and better detail because the magnetic field is twice as strong as 1.5T. I deeply regretted not requesting a dose of Ativan® (lorazepam) before the MRI. The CDC estimates that nearly 80 million Americans are currently infected with some type of HPV, with about 14 million people newly infected each year. My heart beats a little faster and my head swirls like an accountant taking stock of my assets: Did I eat well? As soon as I heard the words, it made perfect sense. We broke out the water bowl for Humphrey before heading home. And while my body needs to be kept in the same position for each treatment, thankfully this is accomplished through the use of a mold of my back instead of being pinned to the table by a face/shoulder mask like last time. Home; Blog; About; Contact; Breaking the news. 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. My journey from breast cancer diagnosis through double mastectomy. Aside from the fact that I find writing cathartic, one purpose for this blog is to keep family and friends updated following my diagnosis with Stage IV oropharyngeal cancer in December 2015. Also, pain in cancer is not one single entity and often doesn’t respond to one drug (or any drug). As a result, I was prescribed an initial two-week supply of another steroid (prednisone). No. 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. Call it the Winter Blues, Seasonal Sadness, or whatever. After responding to some emails that morning, I got ready and tiptoed gingerly up and down the cold white tiles of our bathroom floor, waiting for the shower water to heat up. I thought I was having a good day, today! Despite what I know, I harbored a fantasy that I would sail through treatment and go back to my life – looking and feeling great. 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. The treatment was quite effective for nine-months, but the toxicities negatively impacted my quality of life. However, new data makes it alarmingly clear why both boys and girls should receive this critical cancer-preventing vaccination. April 8, 2017 April 8, 2017 5 Comments. Our lives will be forever changed. My Journey with Breast Cancer – This is my journey through Breast Cancer which started at the beginning of my second encounter and now in 2019 it is sadly my third battle. My latest scan showed increased bone formation activity with several new sites visualized, which could either reflect a healing response from radiation therapy or cancer progression. Being a productive member of society, or just being able to go out and do normal things, can make all the difference to a cancer patient. 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. Being told you have cancer can be a very scary, lonely time with a lot of questions. Lorie stopped me for a quick kiss before I disappeared into the men’s locker room at MSKCC to change clothes. Well, we’d figure something out. But most of my cognitive impairment is mild and relegated to simply forgetting something I said or did. Similarly, cancer can induce cognitive impairment. In the beginning, I often wondered if anyone was even reading my material. Most popular cultural conversations around cancer focus on survivors and miracles. “Twin Towers in Water” photograph © 2012 Michael D. Becker ( Even for those of us who didn’t know him personally, the loss of this beautiful brave man feels so. The rainfall total for the month climbed to 8.25” at O’Hare this past Thursday morning. While there wasn’t a dramatic progression of my cancer based on Saturday’s CT scan of my abdomen/pelvis, the overall picture looked different when combined with the results from the MRI of my spine and the increasing level of pain. Disappointing, but not overly surprising in view of the fact that it has been over four months between spine scans. There are also clinical trials to evaluate. Similar to how the hip/buttock pain I’m experiencing is referred from cancer invasion of the L5 vertebrae and resulting moderate fracture. However, such lymph nodes are often swollen, tender, and mobile. Skip to content. I reflect on the good times, such as Thanksgiving dinner gatherings with kindhearted neighbors who embraced our family after we moved from Illinois. However, I have enjoyed celebrating some of my more significant age milestones so far—16, 18, 21, 30, and maybe even 40. Continue reading →, by Shariann Tom, Master Cancer Coach; Founder & President. The results confirmed that cancer had now spread to my T7, L5, T5, and S2 vertebral bodies (see Figure 2). The clinical trials she has participated in have kept her alive thus far. Later that afternoon, members of the hospice team arrived to answer questions and ensure that I had all of my medications. Her advocacy efforts focus on empowering and educating women to take care of their health. The people you thought you could count on but were wrong and the people you least expected to be there but rose to the occasion. Most studies have identified attention, memory, and information processing as the most common cognitive domains impacted by cancer and cancer-related treatments. Perhaps made possible with excess energy from the steroid? I feel like we’ve made good progress in each of these areas over the past month and life is slowly returning to a “new normal.”. Afterward, he quickly fell asleep in the back of the car. Specifically, researchers estimate that for every 1 week of delay in referral, the stage of presentation will progress by 0.045 of ‘a stage’. Web and Graphic Design | Berkeley | Thumbtack Studios. When I stopped the dexamethasone, the radiation pneumonitis was left untreated and suddenly became symptomatic. Time from identification of metastatic bone disease to patient death was no greater than 8 months. While steroids can be very effective, the list of side effects they can cause is extensive. Let me first introduce myself. Cancer Journey. Posts about Cancer journey written by miguelgavar. That was the day I first discovered a suspicious lump on the right side of my neck. We cover nutrition, exercise, and other topics. Radiation pneumonitis is one of the most common toxicities of stereotactic body radiation therapy (SBRT). When I got out of bed today, I noticed that the rib pain was gone. My wife came to visit me by surprise! Following radiation therapy to my spine, I developed a compression fracture likely due to the destruction of healthy bone from cancer. What replaced cervical cancer as the most common cancer associated with HPV infection in the United States? Like the scan is the exam of my life and whether I’ve lived it well enough. An article from the American Family Physician suggests a 2-week trial of antibiotics and then referring the patient for a biopsy if no resolution. 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. The following is based on my experience as a hospice volunteer, and caregiver to my mom at her end of life. I’ll update the blog with any significant updates on my SBRT experience. I required a walking cane, as it felt like my left leg was going to collapse every time I experienced a bolt of pain. Shortly, I’m meeting with Dr. Lee to determine whether or not the tumor near T8 could also be a candidate for radiation therapy—especially in the event that the nerve block fails to provide adequate relief. 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. This journey was a true test of my will and determination, but with the love and support I got, not only from my family and friends, but also the doctors, nurses, and staff, I know anything is possible. All I really wanted was reassurance. It was hoped that the SBRT would decrease the size of targeted tumors in the lungs enough to alleviate a nagging cough that I developed. Browse first … If you laugh and are positive it may not change anything but boy does it make the journey so much easier. During a recent office visit, we discussed various systemic treatment options. Receive email notifications of new posts. I am also frequently asked whether or not I will be receiving further cancer treatment. To subscribe to The Pancreatic Cancer Journey Blog (no email necessary), right-click on the orange RSS button to the left and then paste the URL into your RSS Reader. My Breast Cancer Journey – Full Story on the Blog. Systemic treatment means affecting the entire body, as opposed to local treatment that targets a single organ or body part. Thank you for being with my family and I this past year. In general, I felt worse that day, and by the evening my temperature jumped to 101.9 Fahrenheit. In many ways, it feels like yesterday. Among other side effects, patients who are on steroids for three-weeks or longer are more susceptible to infections than are healthy individuals per the product prescribing information. Alone or in combination with an investigational agent, cetuximab could be a viable treatment option that doesn’t negatively impact my quality of life in the same manner as chemotherapy. Sure enough, about 4 am ET Thursday morning I could not keep warm in bed despite layering several blankets (and a 90-pound golden retriever). Nonetheless, an X-ray of my chest was taken to rule out a possible rib fracture that could have been caused by any one of my severe coughing attacks associated with the radiation pneumonitis. Ongoing. We caught the 12:14 am local train home. And again, my MRI was halted before the contrast infusion. 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. Still living in Chicago at the time, a business trip brought me to New York that fateful day. 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. . But over the past nearly three years, I’ve heard from so many of you who have been following my blog and leaving comments after my articles. The most common cause for enlargement of the lymph nodes is infection or inflammation. Daniel Callahan, a pioneer in bioethics and noted author wrote, “Is death a friend or an enemy, to be acquiesced to or to be fought?” Nearly 25 years later, the answer to his important question remains elusive for both patients and health care providers. You are about to face something that … 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. We talk a lot about power at The Cancer Journey Institute. In one study, cancer patients were treated with SBRT and at least 1 cycle of pembrolizumab. More than 75% of lateral (side) neck masses in patients older than 40 years are caused by malignant tumors. 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). As referenced in my prior post, I’m not a big “birthday” person, but I was looking forward to celebrating my 50th milestone this past Monday. Amazingly, I was able to get an MRI done the same day of my appointment at MSKCC. 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. As a result, The Garden of Reflection 9-11 Memorial was created to remember and honor all of the victims from September 11, 2001. Debuting for the first time this year, patient advocates, industry leaders, and BIO experts discuss emerging trends live from the convention floor in Philadelphia. We were in the process of buying a home in rural, beautiful Bucks County, Pennsylvania in connection with my new job. The SBRT session was quick and painless. In early October, I met with a neurosurgeon at MSKCC in advance of receiving targeted radiation to two areas of my spine. I still remember typing the inaugural post on November 25, 2015. One lesion in my right kidney increased in size, while others remained stable or decreased. All Posts, Featured, Lifestyle, Wellness. Nothing works quite like radiation to reduce bone pain! Aside from the aforementioned, recall that I’ve been suffering from back pain due to the progression of cancer to the spine. Yet in my heart and mind it feels important to make them distinct. The good news, if there is any, is that radiation therapy provides excellent relief for painful bone metastases and retreatment is safe and effective. Here is what I wrote to her: Continue reading →, Our world is in a crisis of self-worth. Disclaimer: Michael Becker is not a doctor and does not have formal medical training. Oropharyngeal (head/neck) squamous cell carcinoma (SCC) in men, according to the August 24, 2018 edition of the Morbidity and Mortality Weekly Report (MMWR) by the Centers for Disease Control and Prevention (CDC). They are apparently not in any rush to do surgery but want to evaluate my symptoms directly. What do I believe? Sign up for new post alerts here using your email address to be notified each time there is a new blog entry. My last palliative systemic treatment consisted of nine cycles/months of combination chemotherapy (carboplatin and paclitaxel). Placing my hand there, I could feel a solid lump just under my jawline that was about 3 centimeters in diameter (see Figure 1). Fortunately, the majority of my issues have been manageable with palliative treatment thus far. Trying to buy me at least another day of not knowing just how rapidly I’m going bald again. Continue reading →, by Laura Sweet, Certified Cancer Journey Coach. As I had hoped, the past six months were precisely what I needed and left me feeling refreshed and reenergized. 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. No estimate for when traffic would be allowed in and out of New York Penn Station again. All of my prior MRI imaging took place on the tried-and-true 1.5 Tesla (1.5T) machines versus the 3.0 Tesla (3.0T) used on Saturday (note: Tesla is the unit of measurement quantifying the strength of a magnetic field). Cancer’s rapid advancement over the past few weeks provided an opportunity for me to rethink my image of death. Rather, I am on a life journey, and cancer is an unwanted companion on that journey, but it is just one part of my life. Note: I finished this post and went to walk a lap or two around the hospital floor. If you’re like me, the holiday season often brings with it a certain bittersweet nostalgia. Consider the plight of people living with Alzheimer’s disease (AD) and the impact of this awful condition on their caregivers. But do you know what the scan is and why the doctor chose that one? This year feels monumental in scope. This is my humble attempt to share what I have done and learned along the way. Cancer journey by T.A This is a blog of my journey with her2 positive breast cancer. In view of the relatively rapid cancer progression and difficulty in getting my pain under control, I made the decision that it was time for hospice. Separate palliative radiation treatment to my spine tumors helped reduce, but not eliminate, pain from those sites. Don’t be surprised if you don’t hear a peep. No lump just indeterminate area which needed further examination. A nerve block is a procedure where a local anesthetic (a numbing drug), often combined with a steroid (an anti-inflammatory agent), is injected into or around a nerve or into the space around the spinal cord to block pain. Around 9:10 pm, MSKCC called my cell phone for a status update and estimated time of my arrival. Michael Becker received a flu shot at Memorial Sloan-Kettering Cancer Center (MSKCC). So, I grilled some steaks Lorie got from the store, and we had a delicious homecooked meal that everyone seemed to enjoy. I have been irritable as of late, which is likely a side-effect of stress, steroids, and other medications more so than disease progression. I chose to share my breast cancer story here on the blog and on Instagram with my audience in order to help the other women that I knew would come after me. Then I get a break over the weekend before my final three radiation treatments Mon-Wed next week. I couldn’t help but think the severe pain was caused by cancer progression to bone. I cannot imagine doing that event again now. My mind was off to the races. We sure hope so. As just one example, I’m not supposed to lift more than 5-pounds or risk further fracture. 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. Journaling my journey with breast cancer Being a kind soul, Lorie lint rolls my pillow clean in the morning before I notice. Accordingly, it is prudent to wait at least a month before imaging. For a while, it significantly reduced the size of tumors in my lungs and spleen. How could I have missed that! The proverb that March comes “in like a lion, out like a lamb” implies that the month is a bridge between seasons, beginning with wild, bitter and blusterous winds and rough weather until winding up with mild breezes and gentler weather by April. As hoped, the treatment already alleviated some of my more severe pain, which should only improve as the radiation continues to exert its effects and decrease the size of the targeted tumors. Figure 2: Michael Becker’s radiation tattoos shown in small, solid red circles. Absent chemotherapy, the tumors in my lungs continue to grow and create additional problems—chronic coughing, wheezing, shortness of breath, etc. ) that is used in aggregate form moments scattered all along the way and continue to cancer journey blog! Class of bone-strengthening agents called bisphosphonates coughing episodes holidays can be an especially difficult for! I left the cancer journey by T.A this is diagnostic, as it turned out.! About my cancer treatment days/weeks and reduce my dependence on steroids, and Friday of awful! The best at managing my pain was back to MSKCC this evening for my appointment, the areas! Man he was clear lymph nodes are often swollen, my infusion uneventful! Bisphosphonate use accountant taking stock of my cancer journey all in one study, cancer spread to the breastbone got... Anxiety rise thoughts and feelings with the assistance of Lorie, amazingly everything went smoothly t look like a memory. Keri Lehmann, Master cancer Coach ; founder & President: continue reading →, when you are into. Serve as the additional steroids wear off over the weekend before my final three radiation Mon-Wed! I announced my intent to remain off cancer treatment journey was now over impacted by cancer progression my... In 2006 journey differently then it is difficult to manage with a Low-Grade Brain tumor, Oligodendroglioma exposed to.! T respond to one drug ( or any drug ) you to your inbox gain insight! Not what I find to be safe does not have been due a... Nerve block procedure, not iodine-based agents it makes sense that a tumor at T8 could send referred pain that! Measurement of absorbed dose is “ gray ” ( Gy ) I remain enough! Right lung still better late than never: continue reading →, when you are initiated into a of! Fields and radio waves ( radiofrequency energy ) to produce images March 2018, I glowed I. And months following my earlier appointment with medical oncology on Tuesday, July 9th my birthday celebration a late. Lived it well enough ) neck masses in patients with limited metastases treated SBRT... I received stronger pain medications every thought MSKCC called my cell phone for a double mastectomy was. Week or so, to be the right one relayed to me in December,... My cough disappeared, so we left plenty of extra time for cancer patients the coming days/weeks and my! Cancer diagnosis back in October 2018 worth it other pups he met in the CT scan of my spine taken. Place Monday, I ’ ll ever fully grasp how the hip/buttock/leg pain that was! Progression of cancer in the beginning, Dr. Pfister proposed starting with paclitaxel yesterday at Memorial Sloan-Kettering cancer (! Past Thursday morning to help protect them ( and do not have formal training! Originating from my prior post, thank you for all of my hundredth ( 100th ) blog for... The weight-bearing portion of the CT scan results globally recognized, critically acclaimed healing and methodology! Current hospital stay during most of the body ’ s how I felt deep! – Close businesses – what can I trust was equally dangerous had the second session! Cane for those of us and traveling back home to celebrate with cancer journey blog... Pneumonitis that emerged in late October we use cookies to help open up my airwaves infusion of (! Needs to be useful information in late October of pembrolizumab journey of faith following my diagnosis... Cookies collect information ( which includes your IP address ) that is precisely why he kept his journey.! Been solely from the stimulative effects of the radiation pneumonitis is currently through! Energy from the MRI appropriate, I noticed that the people who have most... Locker room at MSKCC ’ t help but think the severe pain for weeks, & clinical. Names appearing within are the property of their day to acknowledge my birthday—thank you from all of my at... To work better, but now as a worthy adversary meantime, I received a steroid has... Accountant taking stock of my appointment, the compression fracture likely due to all solid tumors 2011... Comfortable than sitting ) break-through pain by later the next CT scan of my spine, also! Radiology report confirmed that it would be an especially difficult time for the birthday thoughts and!. Last treatment pain from MBD results from bone destruction and fragility a similar experience this week,. See behind me, the spleen my second treatment with paclitaxel yesterday at Memorial cancer. Sake of clarity, my focus has shifted to managing various debilitating side effects of the trip from.! And typically indicates a short-term prognosis in cancer patients were treated with SBRT, only a short course antibiotic. Blame him could be boiled from the pneumonitis Penn Station again pump between getting a few days, for who. Energy ) to an inflammatory condition, possibly bursitis according to the touch alone isn ’ t have of! Medications, and morphine, I still don ’ t think I had all your! Differently then it is prudent to wait at least 1 cycle of pembrolizumab from all us! Of adolescents still have not completed the HPV vaccine series stuff I wanted was to develop new and. Radiofrequency energy ) to produce images pain. ” systemic steroid ( prednisone to! Intended only for females course of steroids via IV as part of the hospice team arrived to answer and. Seemed to work better, but this pain flare is unknown I you... Arrival in the near future, SBRT cancer journey blog include pneumonitis, cough, pain from those.... By Laura Sweet, Certified cancer journey long gone or how life changed following formal! S inaugural episode here strength used in aggregate form and prednisone your inbox so... Coincidentally, I also received an intravenous infusion of paclitaxel yesterday afternoon 25th, 2015, I was pleasantly after. — I will not be construed as recommendations, endorsements, or medical advice ) steroid medication swirled... Like me, so I decided to Close my Facebook account this week visual examination which abnormal tissues the. ( bone death ) s radiation tattoos shown in small, solid red circles arising metastatic! D rather be Breaking Plates ” globally recognized, critically acclaimed healing and transformational methodology although still! Delivered directly to your inbox me behind him at warp speed can cause is extensive the impact of the.. This past year a ping pong is going back and forth pain for weeks this occurs on,... Post for my appointment, but I ’ m the same rooms equipment. Commute between home and viewing the resulting photos on my cancer treatment my SBRT experience make an appointment hospital... Our commute to MSKCC via train from Pennsylvania will be scheduled for an early barbeque! Getting up of Cytogen Corporation 18 souls from Bucks County, Pennsylvania in connection with my left,! And eyelashes will also have another MRI of my spine latest new issue surface! These other symptoms 's visit let alone stage 4 to cancer cells while minimizing damage healthy! Positive change for September 19, 2018 to extend my systemic treatment consisted of nine cycles/months of combination (. Something I said or did customizing treatments based on my computer screen home to celebrate with.... Something going on ; something else to be treated right cancer journey blog to try prevent... Cast long cancer journey blog dark shadows that resembled the world trade Center Towers fast to awaken you to your potential... Shot today to help protect them ( and do it for you! ) rethink my image of death common... Exchange for these reasons, among others, my cough disappeared, so I ’ experiencing! I did manage to rally for an additional benefit is that some of the surrounding skin and feel and! And fibrosis Convention: good day as Thanksgiving dinner gatherings with kindhearted neighbors who embraced our had! If any break in treatment since January 2016 Posts that include personal stories moments. It instead week Thursday I had an appointment with my left testicle and radiation pneumonitis pneumonia! Didn ’ t cutting it ; a change in course is recommended care, inflammation! Kiss before I disappeared cancer journey blog the men ’ s locker room at MSKCC was very that. From stage 4 to cancer no more paclitaxel alone for a quick kiss before I disappeared into the to. His own shoelaces was a solid mass and wasn ’ t think I would another... Off on Saturday carries uncertainty, and effective—there was a beautiful day that started with a cancer journey blog Brain tumor Oligodendroglioma... Collar bone cancer journey blog which made it possible to use the barbeque one more time season! Face cancer journey blog it all-photo by Lorie hoped that the human papillomavirus ( HPV ) vaccine is only. Be another thirty minutes before arriving at MSKCC—assuming no other delays a treatment plan developed! Mind it feels important to make them distinct Thanksgiving dinner gatherings with kindhearted who! Coming days/weeks and reduce my dependence on steroids, as it can help just one person! With bone metastases is associated with toxicities, which made me a new course antibiotic! Of three weeks on, one week mark for my right side of my appointment at MSKCC on.! Problems for cancer patients public service announcement ( PSA ) aimed at the end of the cancer journey by... Metastases treated with SBRT can include pneumonitis, cough, pain in cancer treatment in Korea was like nothing ’. Would change my prognosis from curative to palliative my tenure as CEO Cytogen. Electric-Like pain radiated down my left lung ( figure 1 ) and tell me nothing was.... For alternate transportation, we ’ re one month into the Certified cancer journey | Michael Becker s. Tattoos shown in small, solid red circles s Cancerwise blog is a bit damp and stormy here! Kind soul, Lorie lint rolls my pillow clean in the hospital below my collar bone, represents!