Cancer: Lessons about Talking – guest post

We only get a small number of blogs from pancreatic cancer survivors.  The disease is usually not caught until late stages.  Things move fast.  Seldom time to stop and put your thoughts down on paper.  I am especially thoughtful about this since my own recent brush with the possibility of a pancreatic cancer diagnosis.

Kathi Instone, mother, grandmother and newly diagnosed cancer patient writes at: A Last Journey – Welcome

My experience with this cancer is limited.  It’s only been a few months since my diagnosis but there are some things I’ve learned. One thing is that time plays tricks  and a few months can seem like forever.  The opposite is also true, forever can pass in the blink of an eye.

As I go to chemo and now radiation,  I realize that I’m seeing the same people.  Montefiore is a big place, with many, many people with cancer. And yet it seems like we are a very small group. We greet each other, or we smile that knowing smile, “well, here we are again”.   Maybe we only see each other as one drifts in to register and the other drifts out having finished the treatment for the day. But we recognize each other. 

Some times we have  time to talk while we wait together. Like today. As I sat down to wait my turn with the big machine I recognized a woman who is usually accompanied by either a younger woman or an older man. Today she sat alone.  Tall, she was almost bent in half, head resting in her hands, almost touching her knees.  We smiled that knowing smile and then she  began to speak. “We all have something in common here, don’t we”?  This cancer brings us together, it doesn’t discriminate, it doesn’t care who we are.”  Her words almost sounded like questions, she was uncomfortable sharing her thoughts but at the same time compelled to get them out of her head.  Then she looked down at her hands and said, “it helps me to talk about it.”  Again, sounding like a question, apologizing for burdening someone else with her thoughts.  “It’s important to talk” I said, “it lets you know that you’re not alone.”  Her eyes got wide, “yes!” she said.   Then she was called in for her treatment and our time together was over. So much had just happened in that short conversation. She worked through her discomfort to reach out.. And I realized that just a few words shared between two people can be enlightening and comforting to both. I felt good that I had said the “right thing” and that she appreciated our shared understanding. 

I’ll see her again, I know. Maybe I’ll even learn her name, but it doesn’t matter. We share something very big. 

from: A Last Journey – Welcome

Share

How Not to Look Like a Cancer Patient at Work – guest post

Here is an insightful and humorous piece.  Dawn Morris, a stage 3 breast cancer survivor, writes an interestingly designed blog: reality from here (cancer’s leftovers) |

How Not to Look Like a Cancer Patient at Work

One fine evening at the local watering hole with the Offsite Strategy Group, I revealed my secret former cancer patient identity to an astonished audience. These guys had worked with me for five years and had no clue of what I’d been through. They were also engineers so I know they’re easily smarter than I am. Therefore, I was nearly as surprised to hear that my subterfuge had worked as they were to learn that I had been through the cancer mill under their very noses. How did I manage to pull this off? Have a seat…

Tip #1: Occupy a relatively secluded cubicle. I was a bit of the “Director’s Pet” at the time (bless her), and so I was sitting a paperweight’s throw from her double-wide executive cube. This was ideal for hiding out from the general employee population, as they tended to avoid cluttering up the boss’ immediate territory. The point is that you don’t have to try to convince your co-workers that your life’s just peachy if they’re not in your face.

Tip #2: Work on a solo project. I was slowly converting our old web design into the newly sanctioned Intranet template, and so was not forced to meet or work directly with anyone else. I had been taking meeting minutes and action items for a couple of IT councils before my adventures in cancer began, but my supervisor reassigned the duty to another employee indefinitely. This was great news, as those meetings started very early and were not exactly easy to transcribe.

Tip #3: Hide your hairlessness. To create the most lifelike effect, I resorted to wearing a wig to work. It was very nice, and played a large role in keeping my condition under wraps. However, by 12:30 p.m. I was ready to rip that thing off my head and send it sailing across the cubicletops. By 1 p.m. I could think of nothing else but that hairy vice squeezing my head. I guess chemo makes your scalp sensitive to pressure, because that wig was the most uncomfortable thing I’ve ever worn. It itched, it made me sweat underneath, and it gave me a headache. I did finally order a sort of Velcro-fastened gel strip to protect my scalp from direct contact with that instrument of head torture. I highly recommend buying one of these if you’re going to wear a “rug” while bald.

My chemo menu did a number on ALL of my body hair. By Easter of 2004, two months after my chemo sessions had ended, I had no eyebrows or eyelashes. To deal with this weirdness, I purchased the first eyeliner I’d ever owned, and dug up an old eyebrow pencil. Every morning for about three months, I drew my face back on with these implements. On a side note, I still use the eyebrow pencil nine years later because my brows never grew back entirely. They’re very sparse, but I love blowing money on cheap drugstore beauty products, so I can deal.

Tip #4: Cover the gray. Not hair — bald, remember? The gray I’m referring to is the poisoned chemo pallor that robbed my skin of its former rosiness, leaving me with a complexion the color of powdered cement. It’s interesting what mud-colored lips do to your favorite lipstick. Just…wrong. Especially with the pinkish colors I preferred at the time. I found that very lightly applied orange-reds gave the closest approximation of healthy lips. For the rest of my cadaverous face, I pulled out some old bronzing powder and found that I looked remarkably lifelike after applying some pretty much everywhere, even on my neck. Pink blush just made my face look dirty at this point. That bronzer was a lifesaver. Or, rather, it saved me from looking like the living dead.

Tip #5: Keep your emotional monsoons to yourself. My health insurance came from my job (rather than my husband’s), and I was terrified of losing it. So, since I was determined to continue working part-time through the merry hell that is modern cancer treatment, I decided that it would be easiest for me to handle if no one knew about my situation. And so all of my apprehensions, aggravations, and increasing exhaustion were hidden away while I was on the job. I cried on no one’s shoulder, and no one knew of the gallons of tears I blinked back.

And that’s how I did it. It’s been nearly ten years now, and I remember it all, as the cliché goes, like yesterday. Fortunately, I don’t really dwell often on my experiences with cancer and its somewhat barbaric (if effective) treatment. I have plenty with which to keep myself distracted — college courses, work, family, cats, computer gaming. And writing my memoirs when I feel like having a good wallow in it all for old times’ sake. Thanks for reading.

from: reality from here (cancer’s leftovers) |

Share

In the beginning…liposarcoma – Guest Post

New diagnosis, new survivor, new journey, new blog.  ~ I Dream of a Cure…..

The beginning….

Hi!!! I’m Jeanne (hence the “I dream of” title)

I am- well was- but am- a healthy happy funny kick ass chick! I’m a mom to 4 great (kinda grown-23,19,17 and 15)  kids and my loves (6yo) daughter. This is my story of cancer…….

On April 23, 2013 I was doubled over in pain at the ER- my appendix was bursting- it had to be, OUCH- it was really painful! After being poked and prodded I started to feel better. I might or might not admit to having farted a few times in the ER which led me to believe that maybe I just had gas and the cute Dr was going to come in at any second and laugh at me. I decided to sneak out. Is that even possible?!?! I got out of the bed gurney-thing and leaned over to put my sandals on for the escape- OUUUUUCHHHHHH- maybe I should stay- back into the bed I went. A few million hours, a CT scan, IV drip, and a few puzzled looks later the cute Dr came back to tell me the good news- I did NOT have appendicitis!! However, I did have a large mass on my right kidney. AWHAT?!?! Mass as in TUMOR? No, I don’t think so. Tumor means cancer and I don’t have that. Uh uh. The next day,  I was a bit freaked out and pretty much threw a fit until the girl at my GP’s office agreed to get me in that day. No, I can’t wait until tomorrow I have an alien inside me! The GP sent me to the urologist. Where, again, I threw a tantrum until I got in the next day. He took one look at my scans and referred me on to someone else – sigh! I just want this “thing” (we aren’t calling it a tumor yet) out! Finally, the following week I get in to see HottieDr and after CT’s, X-rays, blood work etc… He decides that surgery is the best choice. The likelihood of it being cancer is pretty high but, kidney cancer is pretty easy as far as treatments, take it out- heal up- whammo bammo you are good to go on with your life….  WHEW! I get to keep my hair! Now THIS my friends is where I jinxed myself. I had a 7% chance that this “mass” was NOT going to be malignant -ok, ok, not great odds but that night I wrote on my Facebook page that I KNOW I’m special and that I KNOW that I’ve always done things that defeated the odds so I’m SURE that I will be in the 7%  blah blah blah…. Few weeks later (May 9th) I had a radical right nephrectomy and tumor removal (yes, now it’s officially a tumor, boo). After surgery HottieDr came by to say “the tumor was wellllllll unuuuuuusuall”. WTH does that mean?! To ME it meant benign- if you are expecting cancer and its different, that means not cancer, right?!?

I’M SPECIAL ALL RIGHT…… The local labs didn’t know what it was…. They sent the tumor (slides) to Stanford….. Stanford wasn’t sure what it was…… They came back with a diagnosis of high grade liposarcoma but, since it seems to have originated within my kidney (as opposed to ON) they were stumped.

On to the local oncologist who says they just rec’d my PET scan and they found a small spot on my lung and a 3rd tumor just under my uterus (but, deep). He is going to refer me to UCLA however, he would treat me with A) hysterectomy and tumor removal B) resection the lung to take that out C) a round of radiation on all 3 areas and finally 6 months of chemo (5 days on 3 weeks off). Guess I’m not going to keep my hair after all.

UCLA – forget everything you’ve heard we are starting from scratch. Come back in 10 days, we’ll redo your pathology report and meet with the tumor board- until then, just go back to your life. As if THAT’S possible with words like “high grade liposarcoma” “lipoblasts” “3rd tumor” and “sheets of pleomorphic cells” are swimming around in my head. I go back to UCLA on June 18th.

No joking around…..

…..when the Dr’s hand is inside your body!  I went to see the surgeon that is going to do the next surgery yesterday and she decided to do an exam to see if she could “feel” this new tumor – needless to say this was NOT a fun exam but, being ME  I had to crack a joke along the lines of ” my husband is going to be so jealous, I don’t even let him do that”….. She started to CRACK UP, while her hand was still firmly planted where the sun don’t shine- ouch – ohhhhhh the joy!

Anyway- the surgery is going to be this coming Monday and I will begin radiation shortly after that.
Share

Pancreatic Cancer? the clock ticks down…

IMG_1106

Earlier this summer I alluded to some medical problems.  I sit here now, with occasional winches of abdominal pain, eight days post-op.  The short version:  I have a history of diverticulosis.  After a couple of flare-ups of diverticulitis, we did a CT scan. The colon showed nothing new but there was something unusual with my pancreas.  So we decided to do an endoscopic ultrasound – a procedure by which an endoscope is dropped down  throat.  Then, from the inside, an ultrasound can be directed toward my pancreas.  Pictures are taken and a needle biopsy is performed.

At first everything seemed okay at first.  We met and decided just to watch and wait.  Just to be sure we did an MRCP, an MRI of the area.  The results of this prompted a call from my GI doc.  He wanted me to see a pancreatic surgeon.  Within 4 hours I get a call from the surgeon’s office.  (Referrals usually take a week or two).  The surgeon wants to see me with the following two days.  Now I start to worry.

I start doing my research: on the surgeon, the possible procedures, and the culprit finding – intraductal papillary mucinous neoplasms (IPMN).  IPMNs are precancerous structures.  Their size, location, and composition influence to potential for becoming malignant.  There are three criteria that guide the decision to do surgery.  They must be thick and sticky – mucinous.  Mine are.  They must be larger then 2 cm – mine are.  They must be blocking the main duct – one of mine does.  Finally the presence of something called a mural nodule, a cyst that could be an early cancer, seals the deal.

The surgeon says the clinic sees about 1200 cases of NPMN per year, and only recommends surgical resection about 35 times out of that number.  That is what he is recommending – removal of the distal portion of my pancreas… and, in my case, removal of my spleen.  Enlargement of my spleen was the predominant symptom of my leukemia, almost twelve years ago.  It has always remained somewhat enlarged and damaged.

The addition of my spleen means the procedure cannot be down laproscopically or thru small incisions.  So it must be an “open” procedure.  If we were in Skpe now, I could pull up my shirt and reveal to you an 8 inch incision, starting at the tip if my breastbone and descending straight down to my belly button where the incision curves around to the left.

The surgery, a distal pancreatectomy and splenectomy, took place last Wednesday.  It was about a four hour procedure.  There were no surprise findings.  Everything seemed to go well.  In fact I did not even need an external J-P drain for blood and fluids.

Pain was a big issue.  My diaphragm was quite angry with me.  So it hurt, especially when I breathed, moved, coughed or sneezed.  The term “gas pain” took on a whole new meaning.  I had a PCA (patient controlled anesthesia) filled with Dilaudid and that surely helped.  But after the first recovery day they wanted you up and moving, up and breathing (you’ll remember I told you it hurt,  hurt, hurt to move or breathe!)

But I came home on Monday.  Tish took off work to take care of me, keeping me hydrated and pain-free, reminding me to get up and move around, do my breathing exercises.  We took a trip yesterday to Goodwill (Senior Day) to buy a cane, then to the library for a few movies.  My diet is still just full liquids plus one egg a day.  As long as I drink 4 protein shakes a day, my surgeon is happy.

And so am I, happy that is, mostly, patiently waiting til Friday, when we get … the pathology results.

Take care til then,

Dennis

Share