Archives for posts with tag: Cancer

ThoughtBubblehttp://roadkillgoldfish.com/friends-cancer-want-know/

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Visited my oncologist – the fabulous Dr. Shroff – SmileyFace on Friday for a regular office visit and to have my port flushed.  I was left in the examining room for about an hour waiting for my doctor but I do not get impatient as I know sometimes the prescribed 15 minute appointments run long, particularly if she has to deliver bad news.  And Friday, as I would find out later, was a bad news day for lots of her patients but fortunately for me, I was not among them.

I feel pretty good, have a good head of returning hair, and all systems are “go” for now. If anything I am too fat.  I emerged from chemo in March with incredible aches and pains in my bones and joints so each time I worked out at the gym I couldn’t sleep for the next two days because of the pain in my lower extremities.  As a matter of fact, right before my cancer diagnosis last fall I was investigating alternatives to knee replacement surgery.

My right knee was replaced in 2009 and way back then the ortho doc told me my left knee was not far behind.  That knee surgery in 2009 was big and bad and recovery was difficult so I was actually looking at stem cell therapies that might help me avoid surgery when cancer interrupted my research.

Anyway, despite having put on weight in the past 2 months, my fabulous oncologist could not have been more supportive and encouraging.  She didn’t scold for the added weight.  In fact, she said it was great to see me so hale and hearty (or something like that).  I told her I was going to pursue left knee replacement and she gave it her blessing, encouraging me to do whatever I needed to do to feel good and get back to all my regular routines.   Those routines include regular exercise that requires fully functional knees.

After my visit with my fabulous doctor I was ushered into the chemo room so they could do my blood work and flush the port.  The oncology nurses are just so remarkable they deserve a mention here.  Throughout my four-month chemo journey,  they  delivered that toxic cocktail with great skill, cheerful support, and friendly efficiency.  They have to blend accurate nursing skills with the most elegant customer service skills, and do it with warmth and humor all day every day to folks who are at some of the lowest points of their lives.  They watch some recover, and watch others fade, and still maintain that relentless warmth.  I thank them all each time I visit, but also wanted to make it known here as I suspect many of my fellow cancer patients have had similar experiences.  If you are reading this and had a similar experience, feel free to comment.

Provided cancer stays in my rearview mirror, I will move forward with knee replacement sometime before February 28.  That is when my medical year ends so I would like to get it done this year since I have already met deductible and out-of-pocket.

For now, back to the gym I go.  I need to lose weight and build up strength in both legs which is key to quick recovery from surgery.  To that end, I am headed to the kitchen to whip up a HUGE batch of gazpacho: a crispy, cold summer soup with lots of vegetables and not many calories.

Gazpacho

https://www.yahoo.com/health/things-you-should-never-say-to-someone-who-has-cancer-93414490137.html

Money2I was diagnosed with breast cancer in early October 2013 and had 11 business days to prepare for double mastectomy. Virtually every other day I was heading somewhere for a test or to fill out paperwork. Not only did I have to take care of so much administrative stuff before surgery, I also had to get my house ready, and I had to make preparations at my job. Needless to say, this was extremely difficult because of the tight time constraints coupled with a diagnosis that scared the begeezus out of me.

One of the many tests my surgeon scheduled for me in the 11 days prior to surgery was a PET scan and an MRI. Perhaps now is a good time to say I am fully insured having a PPO with a major provider via my employer. After surgery on Oct 29 I had to go back for second surgery 3 weeks later for more lymph node removal. Then chemo began Friday the 13th ( I kid you not) of December. 4 months of chemo followed by 33 radiation treatments and I am now trying to return to normal.

About a month after my initial surgery, I received notice from my insurer that my claim for the MRI/PET was being rejected and I should expect to receive a bill from the facility that performed those two diagnostic tests. My insurer let me know I was responsible for payment in full. Shortly after that I got a bill for roughly $8500.00.

So began a frightening journey into insurance hell. I am a smart person but I know virtually nothing about how to fight an insurance company. I felt like a blind person in a cave swinging at lumps of coal. My repeated attempts to resolve were futile. I shared my frustrations with our HR rep at work and he reminded me that our benefits plan included the service of Health Advocate. So I reached out that day and it was one of the best decisions in my life.

First, lucky for me that our HR rep was informed because I certainly was not. Second, I am just so grateful for such a service and happy to know it is another one of my employer-provided benefits.

Working with the Health Advocate rep was simple, timely and straightforward. Communication was always on time and easily understood. I would not have known all the required steps nor the timing of those steps in order to wage a good fight regarding this $8500.00 charge. But my HA rep knew and finally managed to win on our final appeal. I ended up paying $114.00 instead of $8500.00 and this appeal process took about 4+/- months. I would have failed without the assistance of Health Advocate.

I have since recommended the HA services to anyone who will listen. I encourage anyone facing health care issues to investigate HA and utilize them if necessary. I was trying to fight the rejected claim with emotional responses. The Health Advocate is schooled in responding with medical and processional reasoning which certainly has a greater chance for success.

Even fully insured, this cancer battle has been a huge expense that I never saw coming. It would have been so much worse, had I been responsible for that $8500.00 bill.

Thank you new-best-friend Health Advocate! I expect to stay in touch for many years to come.

That’s my story. I hope this is helpful.

Crap

My life is crap and revolves around crap, My last chemo is next Friday 3/21. this chemo journey has been more than i bargained for and so much more difficult than i naively imagined.

Chemo began on Dec 13 and has continued EOW since. My treatments are on Friday but the misery begins 48 hours later and takes various forms but nearly always includes the inability to crap or, alternatively, crapping too much. Surely my stomach feels permanently distended. i have considered stabbing myself with a juice box straw just to get some relief but decided against that since that would just be another thing for BCBS to NOT cover.

My troubles with BCBS are too lenghy for a blog post so I am thinking about chronicling that in a white paper followed by a screenplay that would be turned into an Erin Go Brockovich (Happy St Pat’s Day) type film.

Back to crap, etc. I know I didn’t corner the market on chemotherapy trauma. i just share here because it is a safe haven for bitching among others who read without judgment and who may feel the same.

In addition to crap issues I have experienced twitchy legs. sleeplessness, insomnia, redundancy (wait-did i already say that?), forgetfulness,  itchy breakouts on my chest and arms, skin cracks/peels on hands and feet, neuropathy, sore throat, and of course I am bald.  But it all comes back to crap.  Nothing throughout this journey has caused me as much misery as the inability to crap or the inability to stop crapping.

At this point I am looking forward to my colonoscopy just so my GI tract can start over at zero.

oh cancer, how I loathe you.  Oh chemotherapy, how I hate you despite all the good you do. Oh former life – life before cancer – how I miss you.

As i was showering today i noticed my scalp felt like it was sunburned. It was kind of sore in spots. As i began to investigate  i realized my hair was indeed falling out. I knew it was inevitable and had been wairting for it much like you wait for the audit team or a colonoscopy. So anyway the balding is underway.
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I am still debating the wig.  I may just stick with ballcaps. I have a great selection and i love ballcaps. Today i am wearing a cap i bought at US OPEN tennis 2009. It was one of the greteast trips i have ever taken. A friend and i flew to New York and caught a Mets game,  a couple US OPEN matches and then got to see Derek Jeter’s hit to pass Gehrig. It was heavenly! We also killed time over wine and cannoli in Little Italy. Just a really good time. Travel is such a great educator as well as an excellent recreational activity.
This time last year i was in the final stages of preparing for trip to Iceland. What a difference a year makes.  But i will get well and i will make plans and i will travel again.  I need to visit Yellowstone in winter and New Mexico for balloon festival. I want to stroll Savannah and catch the ferry to Cumberland island. I want to witness the incredible tidal action in the Bay of Fundy. I’d like to visit North Captiva Island in summer and stay in a glorious mountain cabin in the Smokies maybe for Christmas. I have lots left to see and do – just might have to be patient until i am no longer a patient.
I keep telling myself that delayed is not denied.

I will prevail.

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Tomorrow is my first chemo.  Chose Friday afternoon so I can consider it my Happy Hour.  Sister is taking me and I will be wearing Depends just in case I crap my pants (dohhhh). Also placing puppy pee pads on the car seat. Semper paratis and down the hatch!

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Remember when Joey on FRIENDS said “this is a moo point – a cow’s opinion”.  Priceless.

When would I have gotten “sick” and what would that have been?  I keep going back to that question.  Obviously I had a big ole tumor that had spread a bit so when was I going to feel sick?  And what would my symptoms have been?  In the long run it truly doesn’t matter and is more of a curiosity now.  But still I wonder.

And I wonder what the genesis was and how long the cancer was parked in there.  I am a regular visitor to my docs and keep a faithful schedule of exams and checkups for all my body parts – boobs, teeth, eyes, uterus, colon, etc., so…so…so…this sneaky little bastard hid from view for some period of time that is now and will be forever unknown.  I don’t like not knowing.  Makes me feel powerless.

So cancer will be my constant companion even if I make it to remission.  Because I have read enough to know that once it identifies a host, it is most reluctant to vacate the premises permanently.   Like an extra layer of belly fat or crow’s feet or skin tags, it is just a part of my life from this point forward.  But unlike those items, it more likely an aggressive participant in my death.

I am not depressed.  I am just thinking this through at least partly because I got the lab report today from second surgery.  3 of 16 axilary Imagenodes removed were positive for cancer.  That means 13 were not (paging: Glass Half Full).  Lucky 13.

I hope those lucky 13 are not a moot point.

Visit to breast surgeon today and I have to have more surgery.  I probably don’t have a good command of the terminology but the cancer had spread to 2 of 4 axillary nodes so I go back under the knife on November 19.

Chemo will begin about 3-4 weeks after that 2nd surgery and radiation will follow chemo.

I hope that I do not have to hear “everything happens for a reason” anytime soon.  Additionally, I hope not to hear, “you are only given what you can handle” because both of those cliches stink.

Shit happens – often without reason – and right now shit is happening to me.

And again, I am afraid.

Comparing schedules we decided on late February 2013 for our Iceland trip.  I love to travel and love planning trips almost more than actually going on them.  So beginning in November 2012 I started my packing list, my countdown, and my online shopping spree.  Such fun I was having.  Sherri didn’t need to make many purchases since a Minnesotan already owns lots of robust cold protection items.  Besides, she was pursuing her doctorate and was keeping busy with that and all her other responsibilities.

We discussed how long to stay based on the things we really wanted to see/do.  Tops on both of our lists was witnessing the Northern Lights.  So after some research, I decided that we should spend a few days and nights in Akureyri which is the second most populated city in Iceland topping out at 30,000 hardy souls.  Sherri agreed so we made plans to land in Reykjavik at the international airport, catch the Flybus across town to the domestic airport and fly north to Akureyri later that same afternoon.  Our international flights landed within minutes of each other (which is how most of the international flights operate) so Sherri and I made plans to meet at the waiting area just after customs.

We did indeed meet there after our overnight flights and let me just say that flying Icelandaire is exceptional even in the cheap seats.  Sherri and I both loved our separate overnight flights with comfy seats and personal media in the seatback.  She and I chatted it up for a few minutes, I hit the ATM and nearly drained my bank account because I forget that commas and decimals points are reversed in Iceland and off we went to the domestic airport.  Sherri was a bit fatigued but that was to be expected for someone battling cancer.

We parked our bags at the domestic airport and had a few hours to kill so we headed to University of Iceland.  We both are drawn to academic settings and we just wanted to be on campus to get a feel for our surroundings, catch up more, and maybe get a bite to eat while we waited for our domestic flight to the north.

We were dropped off at a student center with lots of activity, a cafeteria and a bookstore.  HEAVEN!  So we chatted, browsed, noshed and marveled at the surroundings both inside and outside.

Reykjavik is tucked in between mountains and sea and the vistas are glorious.  The weather that day was just awful as we left the international airport.  We were fully prepared for awful weather the entire week and our first day was all that we expected.  But as it turned out, the worst weather we encountered was during the first 4 hours we were there.  We had moderate temps and very little precipitation for the rest of our stay.

We left campus shortly after noon and returned to the domestic airport so we could collect our bags and get checked in for our 3pm flight.  That was a huge waste of time.  Domestic flight is as convenient as catching a taxi.  You get dropped at the door or park about 20 yds away, show your ticket and check your bags and that is it.  No one sniffs your shoes or looks at you naked or makes you queue up.

The flight to Akureyri was gorgeous.  It is only about 45 minutes but you leave the bustle of Reykjavik and head north into desolate, barren, isolated territory not far from the arctic circle.  As soon as we were airborne, the landscape reflected deep, deep snow and lots of ice.  Air Iceland is the domestic carrier and they rival Icelandair for gracious hospitality.  It was a wonderful flight.

Akureyri is a ski town.  It is cozy, warm (despite the snowcover), and charming just as you would expect of a ski-town. We checked into Kea Hotel which sits at the base of the iconic church that appears in most photos of this inviting town.  This hotel offers across the street access to restaurants, sundries, shopping, and browsing.  We checked in and went exploring.  We were delighted to find the restaurant right next door offered soup and bread (sounds like prison food but it was savory and delightful) for less than $10US daily.  It was self-serve so you could eat a loaf of bread and consume a couple gallons of soup if you were so moved.

A long day chased by warm soup and a glass of wine meant an excellent night’s sleep awaited.  Heavy cloud cover all but assured there would be no chance to see the lights on our first night.  So we tucked ourselves in, and in the few seconds that separated me from deep sleep I counted myself among the luckiest on the planet.  I was pursuing a dream and loving every minute of it.

ZZZZZZZZzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz.

To be continued. Again.Image

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