Wednesday, January 12, 2011

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.


(...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.

Tuesday, January 4, 2011

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.