Never Forget the Fight

This is Ann's sister writing. With a heavy heart I must tell you the blogs have come to an end. On October 3, 2011, Ann Clarke Dollard was called by God at the age of 47, following a truly courageous and lengthy battle with breast cancer. I hope that through these posts you have gotten to know and love Ann the way I do. A true inspiration, through the end she showed remarkable strength and maintained a sense of humor. Well known for her big ideas and unconventional wit, Ann was a true gift to all who were lucky enough to know her. She was preceded in death by her father, Jerry Clarke. She is survived by her husband of 18 years, Michael Dollard, her beloved daughter Stephanie, age 9, and her mother Mary Clarke of Manassas. She is also survived by her siblings, David Clarke, twin sister Joan Clarke-Beahm, Daniel Clarke, Paul Clarke, Joseph Clarke, Elizabeth Kelso, and Jennifer Layden, 13 nieces and nephews and countless friends. Family will receive friends at Pierce Funeral Home in Manassas on Wednesday October 5th from 6-8. Funeral services will be held at All Saints Catholic Church in Manassas, VA on October 6 at 10am. Interment will be at Stonewall Memorial Gardens with a reception to follow at their house in Clifton, VA. Memorial donations can be made to Life With Cancer in Fairfax, VA www.lifewithcancer.org

Quick Update About BTBO Party and New Chemo

Hi all. I'm not up to full strength at the moment, but there are a few things I'd like to put out there at least briefly in the interim. I apologize if it comes out curt. You deserve more.

First and foremost,

THANK YOU,

from the bottom of my heart

for attending and/or donating to the Black Tie Breast Optional Party this 9.10.11. I am so honored by your support I don't know what else to say.   I heard our guests had a good time.   I, alas, wasn't able to attend! Which leads to my next update...

As many of you know, I was feeling very ill and stayed upstairs close to a bed pan and warm bath all evening. It turns out that my cancer has spread. This time it's crossed into my spinal and brain fluid. I've been undergoing a series of tests and procedures, etc, to figure it out, and I have a spinal tap scheduled this week to try some new chemo. We'll see where it goes from there.

Prognosis is 4-weeks to 6-months if you believe statistics. I plan to stick around at least another year that so I can actually enjoy a 2ND ANNUAL Black Tie Breast Optional Party, given I missed the inaugural one!

More later...

Dancing to a Different Beat

I've always known I can't dance.  I don't have any rhythm.  It's not in my proverbial blood.  But it's usually not a problem that a few cocktails can't fix.  Lately, however, it's been getting a little crazy with my real blood. 

You'll recall that hours before leaving on vacation, my red cell count was so low that I had to get an emergency blood transfusion. Well, upon my return 11 days later, lab results showed that while red cells were back to normal, my platelets and white cells were too low.  We got back from Hawaii late in the afternoon last Monday, Aug 22nd.  I went to see my doctor for lab tests and chemo the following Tuesday morning.  Unfortunately, I was DENIED treatment for the week. 


I wasn't really surprised by the platelets results.  I suspected they were low because I was covered in bruises, but also because when I nicked my thumb opening a beer on some beautiful beach in Hawaii, it took over 5 minutes to stop bleeding.  (I know, I know -- drinking on the beach is dangerous work.)

At the same time, it didn't really cross my mind that low white cell counts might be why I was tired and light-headed occasionally.  I figured that was standard, vacation-overindulgence.  It wasn't until the lab report came back that it dawned on me the count had dropped so low because I didn't take Neupogen shots during vacation.  I'm supposed to give myself injections on certain days of every chemo cycle.  The vials cost thousands of dollars and have to be kept refrigerated.  I thought it would all go bad en route to Hawaii for 14 hours and/or because the ice packs would melt and fail TSA inspection, so I didn't bring any.

As a result of no shots, when I went back to the doc for the follow-up tests this past Monday, Aug 29, I was denied treatment AGAIN because, while platelets were back up, my white cells still hadn't rebounded and remained too low for chemo.  So we're up to two weeks in a row, plus my vacation week, that I haven't been on the program. 

I sure wish these side effects would get in sync.  If there's trouble with my blood, it'd be nice if all three parts - red, white and platelets - act up at the same time.  As if chemo and lab tests weren't disruptive enough, it's nuts being up and down and all around, never knowing which cells are gonna go haywire from week to week.  It's throwing me off tempo.  I've concluded that dancing is even more of a challenge when, besides lacking rhythm, you're also literally lacking some pulse in your blood.

Guess I'll keep drinking on the sidelines while "the beat goes on," probably laughing under-my-breath at people like me who can't dance but will do it anyway.  But I don't want to discourage anyone from coming, so I promise I won't don't that at our Black Tie Breast Optional Party.

Seriously.

I promise.

I'll be too busy.

Ziplining in Hawaii - To Count or Not to Count

Aloha! We're back from Hawaii and I'm here to tell ya the Big Island is INCREDIBLE! Gorgeous, interesting, and fun.   Spent a couple of days at different beaches.  There were green, white, and black beaches, with sand textures ranging from soft and fine to pebbles the size of couscous.  A few other beaches weren't sand at all, but rather solid, black lava.  The water was crystal clear and various shades of blue depending on the depth.  It was amazing.  The area was less developed than the I thought it would be, with only 5-6 "main" (i.e. one and two lane) highways to get around the entire island.  The climate/environment ranged from rainforest to coastal to pasture to mountainous...with a lot of hardened lava/volcanic ash in between. 

We toured a Kona coffee farm and walked through macadamia ("macnuts") groves. We went kayaking, snorkeling, and ziplining, and we hiked to waterfalls, craters and volcanoes.  Some of us adventurous types got as muddy as possible riding an ATV while others elected to go horseback riding instead. Everything was a blast but my favorite activities were kayaking, the ATV ride, and of course, ziplining! 

Which brings me to a quandary about my bucket list.  Technically speaking, the plan was to zipline over a waterfall. Unfortunately, the operator switched the lines to new locations just a few weeks prior to our trip and hadn't updated their website. The original tour included lunch by a waterfall and lines that went over a few more, but the tour we ended-up with didn't have ANY waterfalls, much to my surprise and disappointment. Hence my quandary: does the trip count towards my bucket list?  I'll go with "no, not really," and consider it only partially fulfilled.  That way I have an excuse to go ziplining again in order to properly complete the waterfall portion.

Nothing Normal 'Bout Me

I often wonder if my body will ever get used to chemo.  I suspect the answer is, "no," and to the contrary, it keeps getting worse.  The day before we left for Hawaii, I had chemo (as originally scheduled).  About an hour into my infusion, I noticed that my vision became severely impaired.  I alerted my nurse, Meg, about what was happening.  To try to figure out a possible cause, she ran another blood test.  Turns out that once again, my red blood cell count had plummeted and the test results showed that I was "critically low."  My case manager/patient advocate, Bridget,  who knew I was leaving for Hawaii, promptly scheduled me for an emergency blood transfusion. 

I was admitted to the hospital immediately after chemo.  I insisted to the hospital staff that I had a plane to catch the following morning so they needed to get me outta there.  I laid there in my bed for about 8 hours, tethered to an IV while waiting for two units of blood to drain into me.  The upside was that I got to order whatever I wanted for dinner.  I had trouble deciding on chocolate pudding or strawberry shortcake for dessert, so I didn't get either.  I don't remember what I ate for the main course. Too bad, because it was the highlight of my day.

They finally let me go at midnight.  I went home and slept for a couple of hours, got up at 4am and arrived at the airport around 7am.  Thereafter, we spent a grueling12 hours in the air.  There was also a 6 hour time difference, so by 8pm Hawaii time, it felt like 2am hit-by-a-truck body time.  I was exhausted and didn't care if I was in paradise.  I rationalized that with an emergency trip to the hospital less than 24 hours prior and barely any sleep since then, I had a valid excuse for my lacklustre enthusiasm.  I went to bed sensing that that was NOT how normal people start their vacations.

Black Tie Breast Optional Party

I've had a couple of people ask me for clarification about the upcoming BTBO party on 9.10.11, so I thought it was worth mentioning a few things here. Besides raising money for the Life with Cancer Family Center, the party is also an excuse to dress-up, drink martinis and play like we're grown ups.


First, the "requested" formal attire doesn't mean it's "required" attire.  Wearing a tux or evening gown won't look out of place, but I don't expect people to run out and buy anything special; a cocktail dress or suit is totally acceptable. Black and pink are the party theme colors, so if you happen to have a dress, scarf or other accessories that are pink or have pink in them, then that'll work just fine. Furthermore, as far as I'm concerned, "pink" is whatever light-reddish hue you decide looks good on you (eg, fuchsia, bubble gum, dusty rose, hot pink, pastel pink, cotton candy...whatever shade you prefer). Again, don't feel obligated to go out of your way if you don't already have something on hand.

Second, we're having food brought in by a caterer. The menu consists of a range of hors d'oeuvres only.  Said another way, please note this is not intended as a "dinner" party. Those with a hearty appetite and/or who plan to drink freely throughout the evening would probably do best by having a main course at home prior to the party.

Since this is our first attempt at a fundraising event (not to mention I'll likely be feeling some side effects from my chemo that week), we're keeping things simple. Once we have a few years under our belt and figure out what works and what doesn't, maybe we'll try to add dinner, a greater selection of drinks, more catering staff, live entertainment and possibly some silent auction items.

Third, the BTBO party isn't necessarily a "private" affair.  Obviously I can only invite people I know, but you're welcome to bring guests and/or invite other folks to join us.  The more the merrier and the more funds we'll raise for the cancer center.

Similarly, if you live outside the Northern VA area and you did NOT receive a save-the-date postcard and/or invitation, I apologize in advance if I've inadvertantly slighted you. As mentioned, I want to keep it simple, and I don't see this is as a party that merits a road trip, travel expenses and possible time away from work, so I only invited local guests. Nevertheless, if you'd like to attend the party despite coming from out-of-town, please let me know asap and I'll send you more details. We'd be happy to see you.

Finally, for purposes of planning your babysitter's time, the party "officially" opens at 6pm and I estimate it will knock-off around 10pm-11pm (but it's certainly okay to hang out later if you like).

I hope this answers most of your questions, but if there are any other concerns in the meantime, please don't hesitate to contact me. 

I look forward to seeing everyone!  *Remember to RSVP in writing so that I have correct headcount.

Another Scan, Another Success (I Think?)

Hi all.  Just a quick update about my PET scan from last week.  The report indicates that the soft tissue cancer sites appear to be disappearing!  Unfortunately, there wasn't any measurable progress with the bones, but stable is better than getting worse, so I'll take it!! 

Also, I've been laid-up with nasty, prolonged headaches that won't go away with over-the-counter pain medicine, so I spent yesterday at the imaging center getting an MRI of my brain.  Good lord if I didn't have a headache going into the machine, I sure had one coming out.  It was SO INCREDIBLY LOUD. I can't imagine what it would have been like without with my ear plugs in.  It was a 30-minute assault of tones, beeps, pounding and pulsating noises that I can't really describe.  The closest I can come is that it was a barrage of emergency broadcast signals on steroids, machine-gun fire skewed through a synthesizer, and electronic fusion'ized jack hammers, all coming from random directions in random tempos at random times. My brain must've been lighting up like a pinball machine.  None of the sounds ever made any sort of musical "pattern," which drove me insane.  I tried to figure out a rhythm and at least turn the noise into a mental chant of some kind but it was utterly impossible.  In terms of decibel, it was as if every note was being funneled out of a jet engine then compacted and sent directly into my eardrums.  Maybe they should use brain MRIs to get the terrorists to talk.

But enough about that.  The results of my torture proved useful in the sense that there's nothing wrong with my skull or brain.  Whew!!  I was worried they'd discover all those dead cells and empty spaces I managed to develop from chemicals and other illegal substances I used back in my pot-smoking days.  Sorry Mom. 

So now that we've eliminated a worst-case reason for my headaches, I probably just need my vision checked (even though I think I can see pretty well, maybe I don't know what I'm missing).  But the eye exam will have to wait.  We're off to Hawaii for a vacation in paradise, where I plan to zipline over a waterfall or five. I'll try to think of you losers while I'm gone.

Just Finished My 36th Infusion

 
Hi all.  I've officially completed 9 cycles of chemo.  That's 36 infusions since December 2010, when I was diagnosed with breast cancer for a third time.  I have no idea how many more infusions lie ahead.  Until they stop working, I suppose.

Speaking of them not working anymore, I had a PET scan earlier this week and I'm worried.  Two previous scans showed I was making good progress.  Tumors were shrinking in size or "fading" in density (my translation).  It felt great to hear.  I was ecstatic.  This time, however, I'm really nervous about the results.  I know the clock is ticking.  I know the ride can only last so long. Eventually the chemo train will return to the station.

If I'm reading them right, some studies of the clinical trial drug I'm being given report that patients lived about 5 months longer, on average, than if they hadn't received the drug.  And if I've extrapolated the numbers correctly, the benchmark for starting the 5-months-longer meter is 7 months.  I'm at the end of my 7th month.  I'm terrified that the effectiveness of my chemo has either slowed or already stopped working and that the 12 month window is closing-in on me.  But it's not the studies that are influencing me, at least not consciously.  Rather, it's my intuition that's eating at me, and I pray it's wrong.

I meet with my oncologist on Monday, August 1, to discuss my scan results.  For the first time, I almost don't want to know.  I'm feeling down but I know I must press on.  "I can do it.  I can beat this thing."  It's all I can think about.  There will come a day when I can no longer outrun this. There will be a time when I'm too weary to fight anymore.  But fortunately, today is not that day.
   .

Vacation Details

Okay, let's see.  Where were we?  Oh yeah, our shuttle launch vacation.  First, let's talk transportation. Don't ever fly through Atlanta on Delta Airlines if you can avoid it.   Prior to winning the launch lottery, my nephew, Michael, and niece-in-law Alicia, were planning to spend the 4th of July holiday here.  They had already purchased Delta tickets to fly to/from Dulles from their home in Atlanta.  When we won the launch tickets (notice I said "we"), they simply tacked-on another flight from Atlanta to Melbourne, FL. 

Initially I had no idea that Michael and Alicia were planning to fly into Melbourne, but it just so happened that that's where I wanted to fly rather than into Orlando, and the only way to get there from Dulles was on Delta via a stop in Atlanta.  Naturally we opted to take the same flights as Michael and Alicia.  It worked out great in terms of all six of us spending more quality time with eachother, sharing rides to/from the airports, sharing the car rental and condo, etc.  But that's where the greatness ended.

To start with, the flights were very crowded.  On both legs to FL -- from Dulles to Atlanta, then Atlanta to Melbourne -- most of us were separated, and Stephanie and I were seated near the engine. On the first flight we were right next to it, and on the second flight we were directly in front of it.  It was awful. The engine noise is obnoxiously loud.  To add to the insult, our connecting flight from Atlanta to Melbourne was delayed for an hour.  Apparently Delta was missing an entire crew.  Delay number 1.

On the way back, our flight from Melbourne was delayed because our plane, which was coming from Atlanta, was late leaving Atlanta and thus late arriving in Melbourne.  Delay number 2.  Once on the plane from Melbourne, we arrived in Atlanta 5 minutes too late to catch our connecting flight to Dulles. The next flight was two hours later.  Delay number 3.  Needless to say, we weren't very happy about it. 

Fortunately, Alicia was adept at expressing to the gate supervisor that it was the Delta's fault we were late and they owed us some sort of compensation.  Atlanta was her final destination so it didn't really matter to her that we were late, but she fanagled $200 worth of vouchers for future flights and about $45 in meal vouchers so that we could go have something to eat while waiting for the next plane.  That turned out to be a good thing, because our substitute flight ended-up late too!  Delay number 4.  We finally flew out of Atlanta and got back home to Dulles about three hours later than originally scheduled.  Amazingly, I didn't get my panties in a twist the whole time!  With 3 out of 4 flights operating behind schedule (and all due to one airline and one airport), I normally would've been agitated.  But for some reason, right from day one, I just accepted these and any other inconveniences as part of the whole vacation package, and that seemed to make everything okay. 

Read more »

Roger That; We Have a Go

We're back from our Cape Canaveral vacation. I'll tell you more about the adventures and events surrounding the launch, but suffice it to say that the trip was definitely "an experience."

The launch was absolutely BEAUTIFUL! I can't describe how good it felt to watch. I was always amazed when I saw newscasts of previous launches. But to be there live? STUNNING! I just loved it; and my admiration and affection for the shuttle - for what it is and what it represents - has only grown more rooted now.

The simplicity of the shuttle's lines as it clung to the fuel tank, the rumbling and thunder of its rockets, the marshmallow clouds and brilliant light... "AWEsome" in the purest sense of the word. I can't quite put my finger on it, but the shuttle seemed both vulnerable and almighty as it lifted from the earth and soared.

Despite my joy at seeing the launch, I'm genuinely saddened that we're losing such an icon of America's strength and achievements, and a show of its mettle. The now-empty launch pad will stand as a ghostly sign of our nation's declining leadership status among the world (in my opinion) and a foreboding symbol of where I think this country is headed.

I'm so grateful I was there to witness a piece of our history; it's truly the end of an era.

Now that we're home from our trip, it's back to earth, back to reality. And unfortunately, it's back to chemo. T-9 hrs and counting.

Shuttle Launch Alert!!

Sadly, no one else cares, but I'm VERY, VERY EXCITED about going to the LAST EVER space shuttle launch on July 8, 2011. Yes, my friends, I have the awesome good fortune of going to Cape Canaveral with tickets in hand! Wanting to see the shuttle take off has been on my list of things to do before bucket lists were invented.

Now all of the sudden, with the announcement that NASA's space shuttle program is no longer in the budget, everybody and their moms want a piece of the action. There was such overwhelming demand for tickets that the Kennedy Space Center set-up a lottery system for the opportunity to purchase them. I've been on the mailing list for months, waiting patiently for the announcement that one could go to their website to register. When that day finally came, it read "one entry per household." So at my prompting, I sent an email to my family and encouraged them to sign-up for yours truly to increase my chances of winning. I told them if they win, I'd let them come, too.   Hah!

Alas, my entry was overlooked. HOWEVER, my nephew Michael's, was not! YEEEHAAAH YYIIPPPEEE! YIPPIE YAAAY! "We're going to Flor-i-da. We're going to Flor-i-da." (She says with a butter churn and sounding similar to Eddie Murphy's chant, "you ain't got no ice cream; you ain't got no ice cream".)

We have our plane tickets and we'll be staying in an oceanfront condo at Cocoa Beach, home of Jeannie and her astronaut Master. I can't wait!!

More details to follow!

Vampires Wouldn't Want Me

I went for lab work this morning and the results were not satisfactory.  I've been denied chemo this week.  I think this makes the 4th or 5th time I haven't been able to stay on schedule.  I had a blood transfusion a few months ago, then I had another one just last week.  Looks like I might be headed for a third.  I suspected something was wrong because I'm covered in bruises, and some seem to appear spontaneously.

So sure enough, I was told this morning that I have another new side effect to add to my repertoire.  These bruises apparently have a name:  purpura; and more specifically, my assortment of bruises include "petechiae."  Sounds icky.  Petechiae are small, red bruises, less than the diameter of a no. 2 pencil eraser.  They're caused by leaking capillaries (versus trauma-related bruising) due to low platelets.  The normal range of platelets in a given unit of blood is 150-400.  Mine are at 9.

I'm also anemic (low red blood cells), which explains why I'm pale and more tired than usual, and my white blood cells are also low.  I was told to avoid eating certain veggies and fruits, and to stay away from people so I won't get sick.  The latter might be a problem since people seem to exist all over the place.

Basically, I'm running on blood that's not really blood, because if I don't have platelets, red cells and white cells, I'm not sure what's left except for the beer I drank this past weekend.

Greeting Card for the Sick

While undergoing treatment in the infusion room a few weeks ago, a fellow patient shared this greeting card she received: 

   CHEMO SUCKS


   But if it sucks the cancer right out of you, then
   "HOORAY CHEMO!!"


I thought it was so funny I feel obligated to make t-shirts of it and pass them out to new patients.

Okay, Here's the Deal

It's already June 2011.  My last update, which itself was late to arrive, was in January.  So obviously I haven't taken the same interest in updating my blog as I did during my previous bouts with cancer. There's a reason for it. I'm not happy with my prognosis.  It's been hard on me this time.  Cancer changes your daily life, but when it metastasizes, it changes your future.

The PET scan in November revealed that my cancer spread to both lungs, several lymph nodes, various and sundry soft tissue, and my bones (including a spot on my spine - and remember that rib that was hurting me? -  there, too).   In other words, the monster is on the loose.  I'll spend the rest of my life tracking it down and trying to contain it.

I started a clinical trial in early December. I have chemo twice a week for two weeks, followed by a week off.  It's a three-week cycle that I will repeat continuously for at least a year. . . or until it stops working.  I also have to face the possibility that I will be on chemo, whether it's the current regimen or some other, for the remainder of my days.  I can only hope those days turn into years.

I'm feeling a little defiant today.   So in the vein of Bon Jovi's song "It's My Life,"  I'm taking back my power to beat this disease....AGAIN...and I'm going to try to "live while I'm alive."   Click on the link below, then crank it up and sing along. You might want to open another window first so you can refer to the lyrics at the same time.

"The link below." (Note: if it you receive a security message, choose okay to continue to the site. Be sure to give it a chance to load.)

This ain't a song for the brokenhearted

No silent prayer for faith departed

And I ain't gonna be just a face in the crowd

You're gonna hear my voice when I shout it out loud

It's my life

It's now or never

I ain't gonna live forever

I just wanna live while I'm alive

(It's my life)

My heart is like an open highway

Like Frankie said, "I did it my way"

I just wanna live while I'm alive

It's my life

This is for ones who stood their ground

For Tommy and Gina who never backed down

Tomorrow's getting harder, make no mistake

Luck ain't even lucky, gotta make your own breaks

It's my life

It's now or never

I ain't gonna live forever

I just wanna live while I'm alive

(It's my life)

My heart is like an open highway

Like Frankie said, "I did it my way"

I just wanna live while I'm alive

It's my life

You better stand tall

When they're calling you out

Don't bend, don't break

Baby, don't back down

It's my life

It's now or never

'Cause I ain't gonna live forever

I just wanna live while I'm alive

(It's my life)
My heart is like an open highway

Like Frankie said, "I did it my way"

I just wanna live while I'm alive

(It's my life)

And it's now or never

I ain't gonna live forever

I just wanna live while I'm alive

(It's my life)

My heart is like an open highway

Like Frankie said, "I did it my way"

I just wanna live while I'm alive

'Cause it's my life!



 

From Oct to Dec in 5,000 Words or Less (Give or Take a Few Thousand Words)

By now most of you know that my breast cancer has staked a claim to my body for the THIRD time, this time with a vengeance.


It all started months ago, in late October after celebrating my mother's 75th birthday. My sisters planned a huge surprise party for her. Dozens of local friends and family were invited to the festivities. My mom's twin sisters, Irlene and Arlene, whom we haven't seen in far too many years, along with our cousin Barbara and her daughter, flew in from St Louis. Needless to say, my mother was shocked by the surprise and floating on Cloud Nine.

The party was Saturday night.  To continue the celebration on Sunday, I had everyone over for brunch, or so I attempted. Those who know my culinary skills would argue that it wasn't brunch at all, but rather a sort of "complete failure." Besides hosting brunch, I also had a number of other out-of-town family members overflowing my house for the party weekend. So with several continuous days full of planning, prepping, shopping, decorating, cooking, laundering, serving and cleaning-up, I was exhausted by the time everyone left that afternoon. (Not complaining, just stating the reality.)


I laid down on the couch for a break to watch some television when my chest started hurting. Sharp pain. Every time I breathed. It was coming from the upper part of my left breast (my "GOOD" one), about two inches below my collar bone. The pain wouldn't go away for the rest of the evening.


Not knowing the source of the pain but given my history and the fact that it was in my breast area, I decided to go see my oncologist (a decision that would become a godsend). I called for an appointment on Monday and I arrived in his office on Tuesday. Having thought more about my condition, and about how acute the pain became whenever I took too deep a breath, I informed my doctor that I had diagnosed myself. "I must have broken a rib without realizing how I did it."

Initially I thought of "ribs" as the bones that stick out above your stomach and wrap around your lungs and your back. I didn't really consider anything as high as one's cleavage. But then I realized, yep, rib bones are there, too -- so that must be my problem.  I must've fractured a rib from all of the strenuous hosting activity I'd been doing.  Or maybe it was from one of my dog-clients jumping up and injuring me without my originally feeling it. Or maybe it was a combination of both; one weakened me and the other finally did me in. In any event, I couldn't remember any direct trauma to the area. Still, I told myself, "that must be it, I must have cracked a rib."

Fortunately, I'm not in charge of the self-diagnosis department. Without being injured from something specific, my oncologist was suspicious.  No apparent cause for pain isn't normal. So he referred me for a full-body bone scan and a CT scan.

Kaiser is our new insurance carrier. For the CT scan, they wouldn't let me go to the facility I'd been using since I was first diagnosed with cancer in 2003 because they had one of their own (bye-bye continuity of care). So on Wednesday afternoon, Oct 27 (my mother's real 75th birthday), I went to Kaiser to pick-up two quarts of the nasty, horrible barium that I had to drink an hour before the scan. I forced it down during Stephanie's Brownie troop meeting and after dropping her off at home, I went for the scan. It was cold, but uneventful. I was in-and-out within 40 minutes and back at the house in time to tuck Stephanie into bed.

No immediate release of any results of course. I was told that the pathology report and a CD would be prepared by the imaging center and then sent over to Kaiser's main office. Then I'd have to make a trip to Kaiser's office to fill-out a records request form; then I'd have to wait until they contacted me to say I could come pick-up the file. Then I'd have to make another trip back to the office to get them; and then I'd have to hand-deliver the records to my oncologist. I got the sense my health care management was going to be a challenge.

In the meantime, although Kaiser does their own CT scans, they don’t do bone scans at any of their centers. I spent several frustrating days on the phone being passed around and put on hold, repeating my plight to each new representative. I must have provided my account number three hundred times. Those efforts were followed by waiting for what seemed like an eternity for Kaiser’s medical review process. I was finally given authorization to see the same radiologist I had gone to for a similar scan in a previous cancer life.

So I reported to the bone people that Friday morning, Oct 29th.  Following my fabulous 30-minute scan, I was asked to join the nurse in the x-ray room down the hall. My doctor hadn't ordered an x-ray, but apparently whatever the tech saw in the scan required a second look, so off I went.  It wasn't a big deal to me because I thought I had a broken rib (in my humble opinion) and I assumed they just wanted a different picture.  I left the hospital not thinking twice about it.

That weekend was Halloween. Stephanie was a kitten and collected an obscene amount of candy.

On Monday, Nov 1, the results of my bone scan from the NON-Kaiser facility were efficiently routed back to my doctor, who not liking the results, ordered an MRI. The bone scan showed some "uptake" in the proximity of my pain, but there was no evidence of a fracture.   "Translation please."   It turns out they sent me for that x-ray because SOMETHING was triggering a reaction to whatever potion they used for the scan, but they couldn't see anything on the scan that told them why. They thought an x-ray would clarify things.  Not so.  They still couldn't see any evidence of any injury to the bone - past or present.  Hence, they had no diagnosis or explanation for why the uptake was occurring.  Since the scan and x-rays didn't solve the mystery of my pain, my oncologist decided an MRI might show us what's happening.


By the time we got the insurance issues worked-out for the MRI, another week had gone by. Kaiser REALLY doesn't like to use outsiders and they obviously scrutinized my doctor's orders. The MRI people, knowing how inefficiently Kaiser operates, refused to pencil me in on the schedule. They wouldn't even consider making an appointment for me until they had a referral signed in blood.  Once that was in hand, it was yet another week before I could actually be seen. If you're paying attention, that's two weeks wasted.


While all of that was happening, the good old CT report from Kaiser's imaging center finally came in. I picked it up and brought it to my oncologist. Oddly enough, there was nothing suspicious on my left side where I first felt the chest pain. There was, however, something showing up in my chest on the right side (my former cancer site).  Huh?  Say that again?

Soon thereafter, I felt a lump under my skin on my lower back.


In case I'm losing you, here's a summary. It’s early November and we have conflicting reports. First, there IS something happening on my LEFT side per the bone scan - but no sign of a bone fracture or other injury. Secondly, there ISN'T anything happening on my LEFT side per the CT scan - but there's something showing-up on the right. ... And oh, did I mention, there’s a lump in my back? Good Lord, I'm confused.


My MRI was Friday, Nov 12. Unfortunately, that appointment didn't pan out very well. Confusion ensued in the examining room while I sat there in the dim with ear plugs pressed in   (MRI machines are loud)   and a cool draft up my gown.  There was some discussion over what Kaiser did and didn't approve versus what my oncologist had ordered. Was the MRI specific to my breast area only or was it for my whole chest? Different protocols, one of which they were NOT set-up for. Guess which one I needed?

The radiologist or technician or whatever person she was eventually summoned me to lay face down on the table and advised me to remain still. I was sent in and out of the machine as she made countless attempts to maneuver and reposition me into place to get exactly the right angle, array, amount, vector, longitude, latitude, dose, beam strength, wave length, color, brightness, contrast, rotation, WHATEVER.  Whatever it was, it didn't work. They couldn't get a good image, so I was told I needed to be rescheduled for a different machine. Nice try, thanks for playing.

On Monday, Nov 15, I went to see my oncologist. I let him know what happened at the MRI appointment, and I mentioned the lump I felt.



EERRRrrr-r-rrckkchk

(...that was a record scratch)



Hold on a minute. What lump? "Okay, forget about the second MRI," he told me, "you need to go see your surgeon about the lump first." He continued, “why have another MRI when a biopsy might tell us what we need to know.”  Wha-a-a??   Okay let's get to the point. The million dollar question we all wanted answered is, are your symptoms and the "clues" from your scans stemming from your cancer?  If it turns out the lump is malignant, then we know you have it. Pinpointing whether or not you have a fracture or whether the CT scan shows a new "spot" inside your chest won't really matter. If you have a malignant tumor, the next step would be a PET scan. A PET scan will show us everything that's going on everywhere.


By the time I saw the surgeon that Thursday, Nov 18, I had developed a second lump on the opposite side of my back. On the examining table, the doctor numbed me with a needle, cut me open and removed the tissue. At this point, the intern suddenly felt hot and left the room. We forged on without her. The doctor felt compelled to show the tissue to me (which I thought was gross), placed it in a little lab container, and then sewed me up. She repeated the process on the other lump. Afterwards she said, "I'm sure it's nothing. People get these things all of the time. It would be highly unusual for cancer to occur there." Famous last words. Stitches in BOTH sides of my back made it rather painful to lean on anything for several days afterwards, regardless of whether I was sitting up or laying down.   In other words, I couldn't relax unless I was standing up, and standing wasn't relaxing.


Okay so let's see. How can I rationalize all of this?

    • Bone scan: no fracture? Then it must NOT be a bone injury. It must be muscle.

    • CT scan: something on the right and NOT the left?  Must be scar tissue from prior surgeries and radiation. (Kaiser didn't have my prior CT scans to compare so they wouldn't know what it is, right?)

    • Lumps: nodules in my back?  Must be fatty tissue gone-a-mutating.

I spent the weekend dispelling to myself any myths that I had cancer again. These were all just strange coincidences.


On Monday, Nov 22, the pathology report for the tumors came back and I got a call from the surgeon. She is "shocked by the results" and "very sorry." I have cancer. If she'd been giving out cancer monopoly cards, mine would read "GO TO PET. Go directly to PET. ...Do not pass MRI. Do not collect $200." Collect your wits instead. My oncologist made the right call about a second MRI.  I now needed a PET scan to see where else in my body I was in trouble.


On Wednesday the 24th, the day before Thanksgiving, I was back at the hospital for my career 5th PET scan. I was injected with the nuclear tracer and then allowed to sleep for 45 minutes while it worked its way through my systems: skeletal, respiratory, lymphatic, digestive, you name it. I was awash with radioactivity. They had problems with the machine, so I ended-up sleeping for about twice the allotted time. I'm not a morning person so it worked out great for me. When they eventually woke me up, I was laid out on the machine and sent through the doughnut. By the time the scan was completed, it was nearing the end of the day and people were already leaving for the holiday. It was Thanksgiving weekend and the offices were closed, so test results weren’t going to be forthcoming. I had a long wait ahead of me. I went home and tried not to think about it any more. Not knowing was THE worst part.


Because I didn't know the extent of my cancer - only that the tissue from my back tested positive - I didn't want to say anything to anyone, especially not at Thanksgiving. The information I had was incomplete. Why cause my family to worry?  But Mike spilled the beans to my sisters. They confronted me and I couldn't lie. I’m not that quick on my feet. But I still didn't tell my mom or other relatives and friends and I made my sisters swear not to say anything.

In the back of my mind, somewhere in my conscious, I was still holding-out for some news that would make everything all right again.  Maybe the tumors were just some very strange fluke. Just as my surgeon didn't expect them to be cancerous in the first place, maybe the inverse was that those lumps were the entire extent of it.  If all of the cancerous tissue had been successfully removed, then I was in the clear.
It just wasn't to be. 

That was late-November.  I'm telling you this in January.  There's still December to write about.

The Long Forgotten Hole

'Never did follow-up here on the old blog about the whole radiation-recall thing from my JUNE 2010 post. But here's how the doctor appointments played out:   Nothing. Nadda. No staph or other infection shown by the biopsy.   No reason why the symptoms appeared in the first place, and no explantion why they went away.  But I guess that was good news.

As a reward for having no infection or disease or other condition, I now have a hole in my skin. Yes, a permanant hole in my skin from where the dermatologist scraped the tissue at my masectomy scar for the biopsy. For weeks I thought it was trying to heal. I thought the "dark" spot I could see was a scab trying to form. Then one afternoon I nearly fainted when I discovered it wasn't a scab at all, it was the lining of my implant!

I heard a gurgling as I was drying-off from a shower. Huh? What the..?
I realized as I moved my arm, I could hear a squishing sound.

Remember how the boys (at least the ones in our neighborhood) used to try to make fart sounds by holding one of their hands under an armpit and then squeezing that shoulder? Well, that's kind of what my squish sounded like, except more muffled.

I moved my arm again. I heard another gurgle. To my horror, I looked down at my scar and, literally, I saw water bubbling-up through my skin from my own body cavity !! The "dark" spot I had been unconcerned about for so long wasn't even a scab, it was a hole to the internal darkness of my chest wall!

Now for the gross part. Stop here if you're squeamish and/or if you know that I don't filter my experiences.

So of course the next thing I did was lift my breast/implant to see if any more fluid drained out. And it did. I almost threw-up it was so unsettling. The "pocket" of skin that holds my implant is stretched bigger than the implant itself. As water from showering seaped-in through the hole, it accumulated in the crease at the bottom of the pocket. Holy moly.

I'm always tempted to take a flashlight and hold it up to the hole to see if I can actually look THROUGH the implant and check-out the inside of my chest cavity. That'd be cool.

To this day in January 2011, my skin isn't healed. The only "fix" for the hole will be to have it stitched up. But at this point in time, I've learned that I have bigger fish fry.  Stand by for details my dear readers.