Archives for category: Cancer

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

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.

My hair fell out on  Dec 29th.  Had my final chemo on March 21.  Hair has returned bit by bit.  These are exciting times!  I will need a haircut soon – well a trim anyway.

In my pre-cancer life, I  had short hair for a very long time and I  paid to have highlights for a very long time. Highlights, cut and tip runs about $100.

I am not really sure what color to call my new hair.   Maybe it is grey but because it is so short it kind of appears to be the exact same color as the highlights I used to pay dearly for.  So if I it stays this color or mix of colors I won’t have to pay for those awful chemicals.  Sweet! Who knew cancer could provide such a bonus.

I was chatting with a friend the other day and mentioned that maybe in 30 years we will look back at typical cancer treatments of this era and laugh at how we had to ingest poison (chemo cocktails) in order to get cured.  Maybe it won’t take 30 years.  Or maybe we won’t ever say that.

Either way, I just roll on.  Like deodorant.

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.

So instead of using lovely, descriptive terms I will just be crude and say I feel like I am caught in a shit-nado right now.

Preparing for additional surgery on Tuesday to get what I hope are the last of the cancer-infested lymph nodes out of my body.  Chemo starts in mid-December so I should be bald by Christmas.  I am still debating about a wig.  I love baseball caps and have about a million.  I don’t ever buy souvenir T-shirts.  Instead I buy ball caps.  So maybe I will forego that wig and just wear hats.

As if there weren’t enough crap swirling about, my 82 year old mother fell at home last Saturday and broke her arm.  She already sufferers from a variety of ailments including COPD.  She is in hospital and is struggling with hydration issues as well as breathing and congestion.  Not sure she isn’t just tired of the fight.   My sister is my mother’s primary caretaker and she is with her around the clock.

Picked up the cremated remains of my sweet little black kitty cat yesterday.  She and other now departed furry companions that have graced my life will ultimately be poured into concrete along with me and we will become a haven for the fishies in the ocean as part of an eternal reef (www.eternalreefs.com).

Shit-nado.  Let me know if you can thing of something better to call it.

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

Sherri and I first met in 1986.  We were both short-term contract employees working seasonally at Grand Canyon, AZ.  Sherri was from Minnesota while I was a Kentuckian.  We met just hours after I arrived simply because we sat beside each other at dinner and she introduced herself to me and we didn’t stop chatting for hours.

So we ended up doing a lot of hiking that summer and made plans to do a cross-canyon hike at the end of our contracts.  It was a nearly 50 mile hike from the South Rim, to the bottom of the canyon, up to the North Rim, back to the bottom and back to the South Rim.  This was an inordinately ambitious undertaking given that neither of us were seasoned hikers and didn’t really have proper equipment.  But we trained all summer, and ultimately did the 50 miles in  3 nights/4 days.    I guess that is when we proved to each other that we could travel well together.

I was her maid of honor when she got married, which was just days before i left for England to work with horses.  Time passed, lives changed, I moved a couple of times, Sherri had a couple of kids and we eventually lost track of each other.

In the summer of 2007 an interstate bridge collapsed in Minnesota.  It was a heavily traveled bridge and it collapsed during evening rush hour.  Around that same time, a sightseeing helicopter crashed while touring Grand Canyon.  Both events made me wonder about my long lost Minnesota friend so I began searching the internet.

Sherri had an unusual last name before she got married and I had a vague memory of her being a teacher.  So it didn’t take very long to find someone by her name teaching at a Catholic university in St. Paul.  I emailed.

It was indeed my old friend Sherri.  After a few cursory emails we made arrangements to chat via telephone on a sunday afternoon.  We talked for what seemed like forever, exchanging info and filling in all the missing details that accompany 20 years apart.  It was on that day that Sherri told me she had recently been diagnosed with cancer.

I held the phone so close to my ear it hurt.  And I listened to her describe the onset of symptoms, the diagnosis, the treatment, and the expected outcome.  “I know this isn’t going to kill me,” she concluded.  I accepted that.

We stayed in touch over the past few years and in early 2012 I hatched a plan to see the northern lights.  It was a bucket list item for me and I have been checking those off consistently since turning 50.  I discovered that Iceland offered excellent opportunities to witness the lights and then realized that Icelandaire offered direct flights from a regional airport about 20 minutes from my house.  I had already decided that I would probably have to make this trip on my own since it was a winter trip to one of the coldest places on the planet.   I casually mentioned it to Sherri and she immediately  interrupted me to ask if she could go with me.   DING DING DING DING DING DING!  Of course, I would welcome a good friend who loves cold weather and lives in cold weather and has mastered cold weather.  I’m a Floridian who has already forgotten everything I ever knew about snow and ice.

So, Sherri and I began making our plans.  We emailed and skyped and exchanged packing lists and all along Sherri would keep me up to date with current cancer  treatments and how she was feeling.  Always concluding with “I know this isn’t going to kill me”.  And I believed her because I had no reason not to.Image

So we planned our trip.

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