Welcome to Being Cancer Network, a resource for bloggers & survivors.
- Access to over 1500 personal cancer blogs (new sites added weekly)
- I am a two-time leukemia and stem cell transplant survivor, and have been an oncology nurse for 26 years. This website is meant to help cancer bloggers connect with each other.
( If you are experiencing any problems, please contact me off-blog. email@example.com OR firstname.lastname@example.org. Dennis)
Benign or malignant? that is the question. Another chapter in “Here we go again!” The legacy of one cancer leading into another. I am just a little anxious. The odds are in my favor. I noticed it last spring – a small, pea-sized, pea-shaped structure in the corner of my jaw. It rolled around in my fingers … which is a good sign. The medical word for that is encapsulated. This suggests that it is not attached to anything, that it behaves more like a cyst.
I casually showed it to various physicians. The common opinion – “I don’t know what it is. You probably better have it looked at / scanned / investigated.” But it does seem encapsulated which is good. I am a world class procrastinator. I showed it to a variety of physicians – primary care, dermatology, dentist, hematologist. Just never the right one. I knew I really needed to show it to a head and neck guy, an ENT, an otolaryngologist.
So this winter, when I noticed that it had increased to the size of a marble and that I seemed to be salivating, drooling on the same side as the marble, I asked for recommendations from my nursing colleagues. One Dr. Goldenberg. He took my history, examined the lump, then told me his thoughts. If it’s inside my parotid gland there is only a 20% chance of malignancy. If it is outside the gland, those chances increase to 50%. Benign or malignant, the mass will need to be taken out, excised is the big word for that. But first let’s see what we’re dealing with. Let’s get a CT scan to better visualize and locate it in relation to other structures. Then we’ll do an ultrasound-guided biopsy, send the tissue samples to the pathologist, and get a definitive idea of just what in the heck is growing there.
In the meantime I have my yearly appointment with my transplant doctor who doesn’t like the lump at all. His motto: “any mass is malignant until proven otherwise.” He reminds me that stem cell transplant survivors are “at risk” for head and neck cancers.
Step one, the CT scan, is done. Been there, done that. Most of you have also. The warm feeling that washes over your body when they push the intravenous dye made me feel almost nostalgic. The results show that it is inside the parotid sort of, but not entirely. 1.3cm x 1.6cm x 1.8cm. The differential diagnosis – the list of possibilities – is always scary to read. The pathologist attempts to cover all his bases, legal and medical.
Mine reads: “Warthin’s tumor with concern for malignant transformation; consider oncocytoma versus primary intraparotid or metastatic lymph node.”
I have written about patient’s various dilemmas related to waiting. And I have observed before, waiting for a path result is among the hardest. So it could be a long weekend. Once my otolaryngologist gets the results, we’ll set up a time to talk. We’ll make our plans. Then I’ll got in hospital to get a slim new scar, this one will curve gently around my jaw. If it is benign, that will like be the end of that chapter in my medical life. If it is malignant… well, we’ll just deal with that as it comes. When we become patients, whether newbys or veterans, dealing with it is what we do.
Take care, Dennis
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What is chemotherapy like? A simple question perhaps. I like the way that Josh Kizler describes it. Josh is a 31 year old fighting germ cell or testicular cancer. He writes at his new blog Emerging Environments I had difficulty choosing which of his posts to publish. He writes in a very clear and accessible style. Following Josh on his cancer journey will prove rewarding.
I will narrate a typical day of chemotherapy for me. Reading this, whoever you are, please consider that every component of cancer treatment—the cancer, the patient, the specific treatment drugs, the reaction to those drugs (both direct and side effects), the circumstances, the emotions and attitudes—are all unique.
note: I receive chemotherapy for five consecutive days, seven plus hours each day. In narrating my experience with chemotherapy, I drift between the five days, which are markedly different from one another.
The Alarm Sounds
My alarm sounds at 6:30 but I usually awake in anticipation ten to twenty minutes prior. My mind ranges from clear to fogged, but I am thinking only of the clinic, my infusion, the IV. The morning sky doesn’t resemble sky and is always cloudy, as is the air in my room and the feeling in my clothes. Only the cold sink water evokes another sense.
Half Breakfast and Commute
I step downstairs and figure something small and quick to eat at the table or in the car en route to treatment. The car ride feels like the rest of the morning. There is nothing to be happy about. All thoughts beyond treatment—its efficacy, my future, my family—vanish. I count the days left in my cycle and assess my physiological state at that moment.
Entering the ITA
Mom or dad and I enter the infusion treatment area and wait at the entry point. The receptionist calls us in and I present my license. No paperwork. We sit in the waiting room with other patients and families. There is little observation occurring. Everyone is tuned in to their own day.
Vitals and Chair Selection
At 7:30 I am called in and my vitals—weight, temperature, blood pressure, and oxygen saturation—are taken. I am weighed on the scale and the other measurements are taken in my seat of choice. I usually arrive before the crowds and take my pick of chairs, sitting beside the glass wall, facing one or two other chairs depending on the side of the room. The legs lift and the back reclines.
On days one and four I receive a new IV. I pump my fist several times. The nurse examines my veins by touch and sight. She places a heat pack around my forearm and we sit together until she removes the pack. She touches the vein more and assesses its sufficientness in taking the IV. She places the IV, and then secures it.
On days two, three, and five the nurse checks the IV and completes any necessary adjusting, which is not uncommon.
I take two to three anti-nausea medications, depending on the day of the cycle. By day five, swallowing the pills themselves nauseates me slightly.
The First Bag
The drip begins. It’s 8:00 or just thereafter and the sun has started to peek through the window. Over the course of eighty to ninety minutes a liter of saline solution drips through my veins, prepping my liver for etoposide and cisplatin. There is nowhere to go, nothing to do. The cisplatin is coming.
As the first saline bag drips towards its end the nurse brings the etoposide. She steps away to find a confirming colleague to verify my identification and the drug that I am about to receive. “Please tell me your name and date of birth”, the colleague says to me, proceeding to read my patient ID number. The colleague departs and my nurse hangs and attaches the etoposide, which is diluted with more saline solution.
I receive a half bag of manitol to increase urination and protect my liver. Its mixed with more saline solution and takes time to administer.
More Saline Solution
The second full liter of saline solution is hooked up.
The nurse returns with a confirming colleague. My cancer cells can feel their proximity to the approaching bag. Name and birthdate…patient ID number. Saline and cisplatin.
I pee a lot. This is one of the things I do while receiving chemotherapy. It is an activity. I return my chair to an upright position, pass my two blankets to my mother or father, slip on my slippers, check that my IV wires aren’t caught behind the chair arm or elsewhere, unplug and roll the IV stand from out behind the chair, and carefully walk to the bathroom. I pee into a plastic container marked with CC levels. I check the level and write the number on a tally sheet with my initials pinned to a corkboard in the bathroom. I dispose of the urine in the toilet, flush, and wash my hands, carefully working my way around the IV stand in the process.
The Final Liter of Saline
The final liter of saline begins. There is no joyous ceremony, but a concluding feeling that fills the air between me and whoever has accompanied me to chemo that day. Soon the IV will be detached. Three quarters of a bag remain. Half a bag. One third. Less. Ten minutes. The nurse returns to liberate me.
Peripheral, Seconded Activities
I play Scrabble, cribbage. I send text messages and surf the Internet. I talk to whoever is with me, the nurse, other patients. I make and receive phone calls. I nap briefly. I eat. My mind is present in all these activities but my body is consumed by everything else. I could very well just stare at the wall and be occupied.
There is a clock on the wall of the ITA. I only check it to note when I pee and towards the end of the day as the final liter of saline drips. The IV acts as my clock for the duration of the day, shifting hour from one bag to the next, chemical to chemical, nurse visit to visit. I don’t know what time it is. I only know the chair and the drip that transitions from saltwater to poison and back.
As the nurse provides me with anti-nausea meds and works on my IV a bus awaits outside. As the saline solution starts to drip the bus makes its way towards me. The driver grips nausea and fatigue, which fill up the first 12 rows. In the back sits fluid retention, tinnitus, and hair and balance loss. Once the etoposide begins the driver has already started rolling over my legs. During cisplatin administration he idles on my core, sucking the joy and wellness from my body. The feeling is all physical. The draining of blood, of emotion, of force—it is all physical.
From Departure to Return
Everything occurs in between chemotherapy sessions, on chemotherapy’s schedule, in light of chemotherapy. The IV stops but I am still on chemo. I exit the ITA, walk to the car, commute home, and enter the house on chemo. I take the drugs on the couch, in bed, while eating. The chemo doesn’t stop.
from: Emerging Environments
One of the reasons we like to read other blogs is to share in the experience of fellow survivors, looking for similarities and differences, new insights and catharsis. But another sort of opportunity sometimes pops up – actual practical advice on how to make your cancer experience better. I discovered this little gem of a blog when Amanda, a stage 3b melanoma survivor, wrote, asking to have her blog, Marry Mint, added to our blog lists. Amanda is 24 years old and her youth shines through her writing with a sense of fun and optimism. I commend your attention.
On the housekeeping side, I opened up the blog again to registration and was immediately flooded with 30-50 new “readers” each day. Much as I would like to believe all these are genuine, I greatly suspect that they are not. I have yet to discover the motivation of these scammers since they never attempt to leave comments. Maybe it is just the dubious thrill of causing mischief. But for the time being I have taken down registration permission while I investigate. If you wish to make a comment, please write directly to firstname.lastname@example.org. Also let me know if you have registered and are a legitimate reader. Otherwise I will be deleting most of the 6,000 names.Welcome back! If you missed Part 1 of this series you can find it here. The skills you learned in Part 1 are still applicable throughout part 2Now that you have made through the diagnosis phase and you are beginning your treatments; lets see if we can come up with some ways to help things suck just a little less.Nobody’s cancer treatment will look the same. Medically. Emotionally. Psychologically. You won’t find two people who shared an identical experience. Fertility. Employment. School. Social. Finances. Family. Everyone’s shit is different. Make sure you keep this in mind.What you may find is that this is the point in the game in which you start figuring out what works for you. Maybe you’re starting to create your own tips, tricks and coping skills. Yay! I’m sure you always wanted to add to your resume “can deal with life-threatening illnesses,” right?Something else to note is that what works at the beginning may not work later on; that’s completely fine and completely normal. At the beginning you may find humor is you most effective coping skill, but as you move through your treatment exercise works better. I don’t know. Just remember: if your “go-to” isn’t working have back up efforts on standby.How’s that for rambling? Lets get to the list. List are better for everyone, am I right?1. control : I talked about control in part one, but it’s important, so it’s back. I found it so important to take control of the things I could. I know you’re probably thinking “this whole thing is out of my control!” You’re kinda right. BUT, you can control some things. Take your medications when and how you’re supposed to. Follow the diet you’re supposed to. Maintain the fitness regimen you can/should. Be the best damn patient your oncologist has ever seen! This way you aren’t a bystander in you health care. Continue reading
This arrived in my comment box today. I send it out as a belated New Year’s gift to readers. Amy Ruth is a survivor. 2013 was a rough year. One of the crises she faced was the diagnosis of her father with T-PLL, the same, aggressive disease that turned my life. Her essay shows us that cancer, like other life trials, affect not just one or two persons, but all those within the orbit of one’s personally experienced life. Amy writes at amy ruth, writer / scribbles from a bean bag
I know. It sounds weird. Today, I’m not feeling the Happy New Year cheer. Weird. After all, it’s New Year’s Day, right? I know.
But yet, I have this glitch in my heart, a lump in my throat, and tears rolling down my checks.
Maybe… it’s because I’m travel-worn as we drove home for 17 straight hours yesterday with only two stops (seriously, all 5 of us are gladiator-ish road warriors!).
Maybe… it’s because I’m über emotional that I have to resume my planning, cooking, laundering, mommy lifestyle (which I do love and cherish deep down, seriously.).
Maybe… it’s because I’m a bit overwhelmed as I see all the tasks to be done but only want to resign to “vacation mode” lounging around, drinking coffee, and watching football (Go Gamecocks!). Maybe.
Although, dubious questions still hang in my heart, linger like steam in my brain:
What will 2014 hold?
What unexpected pain awaits me within the grid lines of this calendar year?
This time last year, hope and joy bounced in my soul anticipating the growth and change that would come in the lives of my loved ones.
I NEVER could have guessed that a Type 1 Diabetes diagnosis would be delivered to my oldest son, determining a stringent management for the rest of his life. Never. In a million years.
I NEVER could have imagined that my dad would be diagnosed with a rare leukemia (T-cell PLL), involving trips to MD Anderson, hard conversations with doctors, bone marrow biopsies, questions, tears, and waiting. Never. In a million years.
I wonder if YOU feel this way too. Your heart is heavy with the hard things that have riddled your year— things which you never would have guessed could happen to YOU in a million years:
Periodically it seems, I feel to need to apologize to readers for letting the blog lapse. It was certainly easier to keep up before I went back to work. Back then it was the only release from the pent-up need to give back, to use the experience of my illness to try to make a difference.
Now, of course, I spend time with cancer survivors and their families five days a week. Not only is there less time but the need has been satisfied. That is no excuse. I started this blog and I should keep it up. I still get traffic, even without fresh content. For a long time the value of this site has been about it being a repository of like souls, suffering and finding truth together.
New Year’s traditionally the time to resolve to do better. And so I do so resolve. I set up a new look last January and am satisfied with the look and function of the new software. However, I did get plagued with hundreds of people per month signing up as members of the community. But 95% of new members were bogus. I could never tell what their intentions were. Never did any of these faux survivors attempt to make comments on a post, solicitous or otherwise. For some reason there must have been value in just getting their email address up on my site. Some addresses suggested some sort of selling business. Others were from Russia – suffix “ru”. The suspects in the Target intrusion were allegedly from there. I set up different CAPTCHA tools to prevent “bots” from breaking in. But these phantoms keep coming dozens per day. A number of you have written asking for help registering. I will research the WordPress site and try to open the site up again. I can always be reached via email though, again, I have been lax in that.
This week brings sub-zero weather back to the heartland. So I plan to spend some time cleaning up the computer and bringing the blog up to date. If you know of any new cancer blogs, please pass the information on to me. Trolling the net for new sites takes a lot of time.
I have been developing some ideas about how people affected by cancer deal with their disease, and especially what role information about cancer informs that experience. So I will be asking you all for feedback. In the meantime,
Take care, Dennis