Frankenstein’s Cancer

“Frankenstein”  that is the first word to come to the mind of Sophia.  I was sitting in the family room with a cloth over my head when the two girls came in to see Papa. day #1 post-op.  Since the tumor was only the size of a marble, they were not prepared sweeping length of my suture line.  It starts near the top front of my right ear.  It then makes a small detour around my earlobe before emerging again from the back of my ear descending in a large gentle arc toward the bottom on my neck, stopping just shy of the notch in my throat.

Even though I was in hospital 24 hours, it was termed an “outpatient surgery.”  I elected to be discharged on Tuesday after the Monday surgery.  I had the option of staying an additional day.  But I was able to swallow, I could eat, and my pain seemed well managed on just two pills every four hours.  Before I left the nurse cleaned dried blood from my sutures, adjacent skin, and hair.  This was after she pulled my J-P drain.  This stands for Jackson-Pratt.  At the very bottom of the incision before he closed up the surgeon placed a 8″ tube, the first 4 inches of it round, clear plastic.  The end of it was flat, white, and studded with perforations – kind of like the old fashioned flat hoses we used to gently water flowers in gardens.  The purpose of this one though is to drain, blood that is.  It is connected first to a collapsible clear plastic bulb as in a turkey baster, then on through more tubing to a suction head in the wall.

Over the past twenty hours it had collected 3-4 ounces of my blood.  In my own job at the bone marrow transplant center, I have occasion to “pull” central venous catheters.  Same principle – just clip a suture or two tying the tubing to the skin, then a brisk steady pull.  But when the flat part of the device was pulled through the round hole, I really felt it.

The surgery was remarkable really, both in its daring breadth but also in its seeming predictable every-dayness.  I had spent most of Saturday working in the cellulose-filled attic over the garage, pulling white and yellow electric cable to bring more power, light, and outlets to my workshop.  The work is messy, confined and tedious. You have to work a mask due to the dust and fiber.  I wear a flashlight on a headband in order to see.  This was a job I wanted to finish before my face was to be cut up.

Sunday was better, lazy like more Sundays should be.  Read the paper, wrote a new post for this blog, went to a movie with Tish, then out to dinner for a steak and shrimp.  Who knows when I will be able to chew so easily again.  The week before had seemed long, foreboding and grey – emotionally cloudy.  The weekend was like a calm before a quiet storm.

NPO – nil per os – nothing by mouth after midnight Sunday.  Slept in, took a shower, dressed and grabbed by identification before leaving.  One wonders though why a person might want to misrepresent their identify in order to have this done to them.  I drive,  Tish is too nervous.  That may not be true though.  Maybe she just wears her anxiety on the outside while I keep it subdued within.

We have a community nursing discussion page on the network intranet.  I post short essays periodically, especially when I think my employer might benefit my rather critical feedback.  I wrote last week about my impending surgery and medical leave.  One nurse wrote back that she rarely reads the forum but just happened to that day.  She works in pre-op at IU North hospital and would try to take care of me.  So there I was, laying in a gown in a business-like setting, a business inherently scary, and I have an instant friend and angel to care for me!

I do have an advantage here.  Knowledge is power and I do have knowledge of what is about to happen.  I can substitute anxiety with curiosity.  I can act pointed technical questions.  I can play an alternate role – not the helpless patient on a gurney, but rather a nurse on a tour of the OR.  The anesthesiologist has excellent bedside manner and a give him my complete confidence.  I have come to relish that quick, quiet moment of anesthesia.  That moment that creeps up so quickly and so quietly that it is impossible, almost by definition, to note the precise moment of its arrival.  If it is here, then you’re already gone.  The scrub nurse asked me if I had brought a good dream.  But this is the place beyond dreams.  It strikes me in that last milisecond that this place is more like … well … death …

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And the answer is … CANCER

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When I last sat down to post, I was preparing for a biopsy of my parotid gland.  Is it benign or malignant?  Well, tomorrow is my surgery but that’s not much of a hint.  They were going to take it out, excise it regardless.  We drove downtown that morning to the IU Health Medical Center, the place where I work.  Earlier in the week I had sped up the whole process by going down to the basement area and tracking down one of the techs.  Yes, she said, a radiologist had looked at my CT scan and approved a ultrasound-guided fine needle asperate of the mass on my main salivary gland.  The tech went ahead and made an appointment for me, bypassing my surgeon’s office and the central scheduling department.  The perks of membership (in the healthcare culture)!

She said I would need conscious sedation, a little cocktail of fentanyl and versed, as that area of my face was criss-crossed with nerves and they didn’t want me moving.  So here we are, back in the basement, Tish and I because I wouldn’t be allowed to drive home.  The pace was efficient, a few minutes in Registration, then down to the radiology waiting area. Whoops, you’re getting sedation.  You go to a special area.  Good luck from Tish.  I am led to a small dark room by a tech I met last week.  I slip into a gown.  There is a cool blue glow from the lighting.  As he was starting my IV site, the room started to fill with strangers milling in the shadows – a perky young resident radiologist describing in detail the imminent procedure, two medical students, a pathology tech, and briefly, a pathologist.

I was surprised they only use a 25 gauge needle.  This is pretty tiny, much smaller than I you were getting a flu shot.  I use these when giving sub-q (just under the skin) injections to my clinic patients.  They will take a few samples, send them out of the room to be viewed, determining if these are good enough for analysis or not.  The back to take a few more.  Of course in a few seconds I will be unaware of this.  It will all be like a hazy dream state.  Actually unaware is not accurate.  I will be aware in the moment.  I will feel any pain or uncomfortable sensations.  I will respond when they ask to me turn my head.  I may even respond to questions though I will appear a little drugged.  But the first real awareness, the first real memory that will not instantly float away, will come an hour later in the recovery room.  A nurse tells me the procedure is complete.  If I want to, I can sleep for another hour before I can be discharged. Continue reading

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My Marble Mass – benign or malignant?

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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

Comment privileges continue to be closed due to a flood of bogus members.  You may comment off-line at beingcancer@att.net

 

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What is Chemotherapy Like? – guest post

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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.

What is chemotherapy like?

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.

Pre-Ceremonies
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.

Etoposide
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.

Manitol
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.

Cisplatin
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.

Fluid Retention
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.

Time
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.

My Body
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

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Coping With Cancer – guest post

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 beingcancer@att.net.  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 2 :)
Now 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
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