Special Delivery

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My 12 year old and I have a long standing evening ritual. We read novels together before lights-out. As he is 12, this is not too be misunderstood as "bedtime stories"! (I am asked to always clarify the distinction.) We really do read novels. We've covered a wide-range from Treasure Island and Moby Dick, to various books by Artemis Fowl, Rick Riordan, and Terry Pratchett.

Last night, as we settling in to continue reading Going Postal by Sir Terry Pratchett, Son noticed that I have difficulty reclining. My breathing becomes more labored, I wince, and am subject to dry coughing bouts.

"Mom...why are you always in pain?"  He asks while nestling closer to me.

"I am old and decrepit."

"No, really...why?"  He starts tucking me in gently.

"Because I am really ancient and worn."

"No, really...you always seem to be in pain! How come?"  His head is on my shoulder now.

"I really don't know Goober. I don't have a good answer."

"Find out okay. I want you to be around for at least another 25 years. I would ask for 35 years, but you really are pretty old already!"  He throws a total "Goober-Face" at me.

"Well, I want to be around long enough to see whether you go bald or grey first, so 25 years should be long enough!" 

He proceeds to shark-attack me . . .25 years . . . you got it Goober!

Holding My Breath

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Each Cancerversary I have marked the day. With a post. With a "woohoo!" With shock and dismay. Each time July comes around I start with a feeling of dread. My stage III diagnosis came on a July 8. My re-staging to stage IV mets came on a July 11. This July is four (4) years.

I have no "woohoos" to send up as yet. To be candid, the thin veil of dread that blankets me at the moment, psychically, is as palpable as the 115 degree temps with the 45% humidity we are currently experiencing.

I have my 3 month follow up with the Onc this Friday, July 12.

When I started to lose weight back in April / May, I started to try and pound denser calories. The pericarditis, however, makes it uncomfortable to eat. Today, I am still struggling to flirt with the 100lb mark. I know I sound like a bee-atch complaining about weight -- but its not like I am looking hot in a bikini, mini or skinny jeans!

The chest pains and breathing are becoming more of a challenge, again. (That's the good news.) Although, this time now my entire rib cage feels like it is splintering. Its worse in the morning, when I try to exercise, and when I lay down. Other than that, its tolerable. I am still trying to track down a better cardiologist - one that is not so anxious to discharge me with a treatment plan of hospice.

Then, there is the broken foot. More than six months and still has not healed. I got so tired of indulging burning pain with flats that I rebelled and went back to my killer high heels for the court room. The pain is constant regardless, so why the hell not sport the power-heels. (Note...no power heels with bikinis or minis - but yes with the skinny jeans!)

Then there is the persistent nodule in my neck. Its been there for the last 2+ months. Most likely nothing, right?

So, here I sit on the cusp of my two Cancerversaries, wondering how this July is going to play out. In 2009 two medical oncologists, one surgical oncologist, and one radiation oncologist told me I had only a 4% chance of a five (5) year survival rate. I so need to prove them wrong. Need at least one more July in my life-book.

Holding my breath, with cautious optimism . . .

Random Wednesday

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I am in that state again where I am a "human-doing" rather than a "human-being."

 

It's What Makes You Special, Mom!

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I will share a not-so-well kept secret. I have been under a great deal of stress lately.

Well, truth be told, I live in a perpetual state-of-stress. Okay, truth be truly told, I am a type AAA+++ personality. But, shhhh, that's a secret.

My stress levels fluctuate, however. I can go from mundane-daily-stress levels, to spiking to over-the-top-my-head-is-going-to-explode levels of stress (and back down again) within a matter of hours. It all depends on what goes into the hopper: a client in a gotta-save-me-now mode; battling within a judicial system that has forgotten that what's right and what's legal should not be polarizing concepts; a progeny who is having the worst day/hour/moment ever; a life/business partner fretting or sustaining yet another injury; or being stalked by a hospice director.

My stress over-flowed this morning. I won't bore you with the details. Suffice to say that I surpassed the brim of my personal carafe and ranted a bit, both internally and externally.

Included in the in-my-head rant was the following litany:

DMSO is supposed to exude a wonky smell for 24 hours and dissipate....WHY then, when I had a DMSO infusion I did not start to emit eau de sushi until 18 hours after, and still am 48 hours later?!

Why, when I am a functioning person working through and living with METS do I have a hospice worker stalking me?!

How is it that my oncologist gets testy when I push to have (what I think) a legitimate dichotomy addressed?! (I.e., summer 2011 pet scan identifies a reactive tumor, which is then biopsied and determined to be malignant; fall 2011 pet scan clears me of said reactive tumor ... saying that it appears I am responding to treatment; and early fall 2012 pet scan identifies same reactive tumor, and now says..."since tumor has not changed in size since summer 2011 must not be malignant." But, it was biopsied, and was gone, and then came back (and not biopsied)?)

Why can I not find an oncologist who will personally review my scans and form an independent opinion? (R.O. is my third onc.)

And then there is always the "David Byrne" question: "How did I get here?"

One of my progeny, who had a front-row seat to my over-flowing carafe, and with whom I shared that I am so tired of not being "normal," just patted me on my leg, sighed, then giggled and said, sagely..."but mommy, that is what makes you so special."

I laughed out loud. My carafe, again, was tolerable.


 

"The Break Up" ?

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Did you hear the one about the woman LIVING and WORKING with METS?

This Woman walks into her cardiologist's office...and they "break-up" with her? 





So...this Woman wanted to see the cardiologist, but he was otherwise occupied. So Woman's appointment is punted to the cardiologist's #1 PA.

Because Woman had a particularly rough weekend, health-wise, an EKG is done with a tech before said #1 PA comes in.

PA walks in, sad and compassionate look on her face.

Prior, Woman had removed herself from the exam table and is sitting, like a real "equal" person, on one of the room's chairs.

PA sits herself, with her sad and compassionate look, on the step-up to the exam table.

"Hi...I'm Brenda PA".

Hi, Brenda PA. I am Woman.

"What brings you in today?

Um, scheduled follow up; bad weekend; hoping that the EKG proves husband wrong - that I did not experience a heart attack.

"Yes, I know. Are you still not willing to pursue a treatment protocol of chemo?"

That has been declined, several times; and off-the-table, since September, 2011. Moot topic. Did I have a heart attack?

"Do you have children? How many? What are their ages?"

Yes, three. Did I have a heart attack?

How are they handling your disease? Are they in counseling?"

Living their lives. No, why? Did I have a heart attack?

"Do you have a DNR or DNI prepared?"

Yes, DNR. Don't know what a DNI is. Did I have a heart attack?

"Good. Good. No, you didn't not have a heart attack. I have reviewed and discussed your situation, including what you experienced on Saturday, with Dr. Cardio. He wanted me to talk with you about the "H-word".

The "H-word"?

"He thinks that this should be discussed."

Excuse me, what is the "H-word"?

"It is really a good idea."

E-x-c-u-s-e ... me, WHAT is the "H-word?"

"Hospice".

W-T-H - ????? WHY ????

"The pericarditis is just going to worsen because of your advanced cancer".

Yes, and so....................

"Well, we have to face the fact that your prognosis is not good, not good at all".

Oh, something to do with having metastatic cancer?

"(Small laugh)...pericarditis with advanced cancer...well, the prognosis is not good, the symptoms are going to get worse. We think that a referral to hospice would be smart."

 ****Interlude****

By this time I have my little friends sitting on opposing shoulders. My little "angel" and my not-so-little "devil".  "Devil" is urging me to rip Brenda-PA a new one. "Angel" is cautioning me to just smile & nod and see where Brenda-PA is going to end up with this dialogue. "After all, this could be really good fodder for bitching blogging!" Ah, yes. You are right, "angel"...who's the devil now?

I  am not feeling so smart. I don't have time for hospice. It won't fit in my schedule.

"What do you mean? What are you doing?" (You mean, besides LIVING?)

Everything that I have been doing for the last 18 years.

How are you still working?

How could I not be?

"Really? Wow! How are you able to continue? (Because the alternative is...?) You are so calm. Are you afraid of dying ... Are you ready to die?" (Oh my!)

Brenda-PA, I am not afraid of dying. It is an unavoidable consequence of living. But no, I am not ready to die. I am not planning to do so anytime soon. So, I think I will take a pass on "ready-ing" myself to at the moment, at least this week.

"(Another small laugh) Are you so calm because you are in the 'acceptance' phase?" (Obviously not, as I am NOT READY to engage hospice services this week, or next, or the ones thereafter!)

I don't think so. I am just  too busy...LIVING.

"May I give you the hospice information? They are a wonderful entity. They are not all about grim-reaper stuff (did she just say that?). If I did not work with Dr. Cardio, I would work with them in a heartbeat (oh Brenda-PA is puny). I will give you the card of the intake director and make the referral."


. . .

. . . Brenda-PA plucks herself off her lower perch and leaves the exam room to retrieve the information. She re-enters exam room and meaningfully squeezes Woman's arm while she hands over the card and information sheet. Brenda-PA walks Woman to the front desk and hands the charting information to the clerk. Clerk looks at the paper and looks at Woman and Brenda-PA and asks: "Are we scheduling a follow up visit?"

. . . Brenda-PA, not missing a beat says (with the sad and compassionate look plastered to her punim) "Oh no, there will be no need."  .... Badadum!

I walk out the door wondering, and wonder still, did that REALLY just happen? WHAT just happened? Did my cardiologist just "break-up" with me? Was Brenda-PA a REAL person? I have had heart-wrenching (pun intended) relationship break-ups that made more sense. Talk about turning the classic break-up scenario on its head!

This time it was definitely "more about me" than it was about "them"! And where this relationship was going...well, let's just say I was not thrilled with the punch line!

Post Script:  In less than 5 minutes after posting the above, the hospice intake social worker called me on my personal cell phone. I repeat, with more vehemence...W-T-H???? "I would like to schedule a time for one of our hospice nurses to come out and do an intake. Would you like to set that up?"  No, I would not, but thank you very much! ~~Click~~

“The more you know . . .,"

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“The more you know, the more you know you don't know and the more you know that you don't know.”     

― David Byrne, The New Sins

I did not know.
I thought I had a handle on what to expect.
How dumb. How very dumb.
I thought that the path I chose would save me from the foreseen.
How wrong. How absolutely wrong.
I thought that bullets could be dodged, if I opted to weave.
Sometimes an aim is too sure.
Sometimes fate has other things in mind.
You can never be sure. No sure thing.
Not today.

Today, I learned something I didn't know.
Knowledge can be dear.

Pericardial effusion is extra fluid around the heart.
 

Pericardial effusion is extra fluid inside the sac that surrounds the heart. The extra fluid causes pressure on the heart, which stops it from pumping blood normally. Lymph vessels may also be blocked, which often causes bacterial or viral infections. If fluid builds up quickly, a condition called cardiac tamponade may occur. In cardiac tamponade, the heart cannot pump enough blood to the rest of the body. This is life-threatening and must be treated right away.

Pericardial effusion may be caused by cancer or other conditions.

A pericardial effusion may be malignant (caused by cancer) or nonmalignant (caused by a condition that is not cancer). A malignant effusion is common in certain types of cancer. Lung cancer, BREAST CANCER, melanoma, lymphoma, and leukemia cause most malignant effusions. An effusion also may be caused by cancer treatment, such as radiation therapy or chemotherapy.

Possible signs of pericardial effusion include anxiety and dyspnea (shortness of breath).

At first, a pericardial effusion may not cause any symptoms. These and other symptoms may be caused by a pericardial effusion or by other conditions. Check with your doctor if you have any of the following problems:

• Dyspnea (shortness of breath).  √
• Cough. √
• Trouble breathing while lying flat. √
• Chest pain. √
• Fast heart beat or breathing.
• Feeling faint. Sometimes
• Swelling in the upper abdomen.
• Extreme tiredness or weakness. √
• Being anxious.

Pericardial effusion usually occurs in advanced cancer or in the last few weeks of life. During these times, it may be more important to relieve the symptoms than to diagnose the condition. However, in some cases, the following tests and procedures may be used to diagnose pericardial effusion:

• Chest x-ray: An x-ray of the organs and bones inside the chest. An x-ray is a type of energy beam that can go through the body and onto film, making a picture of areas inside the body.   √
• Echocardiography: A procedure in which high-energy sound waves (ultrasound) are bounced off internal tissues or organs of the chest. The echoes form a picture of the heart's position, motion of the walls, and internal parts such as the valves.
• Electrocardiogram (EKG or ECG): A line graph recording of the heart's electrical activity to check its rate and rhythm. A number of electrodes (small pads) are placed on the patient’s chest, arms, and legs. The electrodes are connected by wires to the EKG machine. Heart activity is then recorded on paper. Electrical activity that is faster or slower than normal may be a sign of heart problems.   √
• Pericardiocentesis: A procedure to remove fluid from the pericardium using a needle inserted through the chest wall. The doctor may use echocardiography to watch the movement of the heart and needle inside the chest. The fluid is viewed under a microscope by a pathologist to check for cancer cells or signs of infection. This procedure can also be used to treat pericardial effusion. Removing the fluid reduces pressure on the heart.

 

Domino Effect

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Last night the pressure in my chest was disquieting. Not that I am complaining, screaming, groaning or kvetching!

It was followed up with heartburn. Who knew plain baked sweet-potatoes could cause such burn?

Then the dry cough starts. Irritating.

This triggers a broad ache through the upper chest wall that traverses the clavicle and tracheal areas.                   Every inch of me wants in the fun.

This then starts a deeper, but still dry, cough. Lung, anyone?

The "cherry" is, what can only be described, as a splintering pain in my chest wall.
                             Think, stomping onto a glass figurine with a lumberjack boot.

The cycle is topped off with stabbing pain up underneath my right rib cage. Because as the song goes...it is all connected.

Sigh....some days are indeed better than others. Today was not that day.