Limbodacious

Everything You Ever Wanted to Know about My Kidneys and My Spiritual Awakening

People have been asking after my kidneys.  I truly appreciate the offers of support and, um, organs.  I wasn't going to post about it because, to be honest, the whole thing is terribly boring.  But I give the people what they want!  And for some reason, the people want to know about my kidneys.  The people are strange.

I apologize in advance, because this is going to be a huge conglomo-post encompassing All Things Renal.  (Note:  I divided it into chapters because they were written at different times in different frames of mind, and are not necessarily meant to "go together.")   (Note about the note:  I didn't want to sacrifice jokes for continuity.  Is that wrong?)

CHAPTER THE FIRST: WHAT THE DEALIO

On a 1-10 scale, 1 being No Big Deal and 10 being A Big Fucking Deal, my kidney failure ranks at about an 8.  BUT, I was prepared for this.  After all the nephrotoxic chemos (most notably my high-dose Cisplatin), infections, and antibiotics, it was really a matter of time.  Before you jump all over my doctors, the correct precautions were taken.  But there is only so much the body can bear, and it was very likely that my kidneys would take a huge blow from chemo after chemo.  After much discussion, I determined this to be an accepted cost, and a plan has been in place to deal with it should the situation arise.  Most likely, my most recent infection and subsequent course of antibiotics aggravated it to the point where I need dialysis. 

I thank you for all your kidney offers.  Ha, that is a sentence I never expected to say.   I will be on dialysis until I can get a transplant.  But don't break out the scalpels yet.  On a 1-10 scale, 1 being Astronomical and 10 being Never Gonna Happen, the likelihood of orchestrating such an event ranks about a 9.5.  I have a rare blood type, my mother doesn't match, my father matches but his kidneys are very much the worse for wear after 20 years of alcoholism and 30 years of uncontrolled diabetes, and I am an only child*.  Oh yeah, and there is that pesky business of having to be cancer-free to get put on the list.  Not to mention the fact that it could be years before I am healthy enough to undergo the surgery and after-care.

So, long story, er, somewhat less long, I am not holding my breath.  But I will follow my mother's advice and "put it out to the universe."  (Useless crazy-ass new-age touchy-feely dipshit ASSvice.  I mean, thanks, mom.)  For the purpose of this post, "universe" is defined to mean this blog.

Cranberry Juice Lover Seeks Same

Helpless invalid seeking living or dead male or female for candlelit liquid dinners, deep narcotic-induced conversations, and long-term recuperation.  You be able-bodied or braindead, I'll be groggy and desperate.  B- a must, 4+ antigen match a huge plus.  No fatties, please.

* For the highly astute thinking, "Hey!  I thought you mentioned sisters!!"  You are not crazy.  They are step-sisters.

CHAPTER THE SECOND:  A STRANGE OCCURRENCE NEGATES THE SIGNIFICANCE OF CHAPTER THE FIRST

I may have a miracle on my hands.  First off, let me say that I do not think believing in miracles requires a belief in a higher power*.  For the purposes of this discussion, I will define miracle to mean, "any act which occurs spontaneously, has positive outcomes for the involved parties, and cannot be explained by traditional logic." 

Consider:  When I was six years old, I was living with my grandma somewhere off a rural road in Appalachia.  We were perpetually broke and sometimes ran out of food.  On the day in question, we had searched every nook and cranny of the kitchen for something that could be made into a meal, and turned up bubkus.  It was so hot that I decided to stick my head in the freezer for a minute.  When I opened the freezer, there was a frozen pizza in it.  We had looked in that exact spot not five minutes earlier, and my grandma never bought frozen pizzas.

This is the memory that rushed to the forefront of my mind last week. 

Periodically, when I go in for dialysis, they draw blood to check my kidney function.  This is basically done to make sure dialysis is working, and to see if they need to tweak anything.  Obviously, my numbers have gotten better since I started dialysis, since the machine is filtering out most of the gunk for me.  But, you see, the other week's blood draw yielded unusual results.  In between my treatments, my numbers improved from the previous week.  Dialysis is an extremely controlled and consistent procedure, so the numbers should stay basically the same ("basically" to allow for minute variations due to diet, etc).

So the doctor decided to do blood draws every treatment, and the upward trend continued.  Which means (and I hesitate to even dare to say this next part, for fear of jinxing the whole enterprise), my kidneys are improving all by themselves.  I want to impress firmly that this is impossible.  Seriously.  Impossible.  (Do I have to explain?  Just trust me.  The whole scientific bit will take away from the momentum of how weird this whole thing is.)

Upon looking at the results, my seasoned nephrologist with 30 years of experience disbelievingly muttered, "Oh... my... god."   If my kidneys continue to improve at this pace, I may not even need dialysis in, say, six months.  (To the All-Knowing Eye of the Internet, if you're looking, KNOCK ON WOOD.)

And like I said, that's impossible.

So what the hell?  Is this a miracle?  I reluctantly admit that it must be.  And you know what else?  I deserve it.  The Universe is settling its debt with me, and it's about time.

* Note to Higher Power, if in fact You do exist:  Thanks for the whole kidney thing, that rocked.  Do you think you could maybe take care of this little tumor problem I have?

Your One-Stop Shingles Shop

Ok, I am only going to do this once, so pay attention.  Due to 20+ searches for shingles a day and several emails asking me about the same topic, I feel some sort of obligation to put some information out there.  If you fall into the 99.9% of people who don't give a shit about shingles, for christ's sake, spare yourself the torture of reading this.  If you are the .1% that comes to my site day after day looking for 24-hour shingles updates, it's your lucky fucking day.  But this is the first and last post on this subject.  I will not be defined by my shingles.

Note:  Although this is the longest blog post in the history of blogs, it is actually the abridged version.  Go here for more.

Overview

People who have had chickenpox (varicella zoster) in their youth can develop shingles (herpes zoster) in later years. During an acute attack of the chickenpox virus, most of the viral organisms are destroyed, but some survive, travel up nerve fibers along the spine, and lodge in nerve cells where they may lie dormant for many years. A decrease in the body's resistance can cause the virus to reawaken decades later. It then travels back down the nerve fibers to the skin's surface.

The reawakened virus generally causes a vague burning sensation or tingling over an area of skin. A painful rash usually occurs two to five days after the first symptoms appear. A cluster of small bumps (1) turns into blisters (2) that resemble chickenpox lesions. The blisters fill with pus, break open (3), crust over (4), and finally disappear. This process takes four to five weeks.

A painful condition called post-herpetic neuralgia can sometimes occur. This condition is thought to be caused by damage to the nerves (5), and can last from weeks to years after the rash disappears.

Controlling the Outbreak

Although viral diseases can't be cured, doctors can prescribe oral antiviral medications, such as Zovirax (acyclovir), Famvir (famciclovir) and Valtrex (valacyclovir), that help control the infection by hindering reproduction of the virus in the nerve cells. "Antiviral therapy may shorten the course of an episode of shingles," says Cvetkovich. "However, therapy must be started as early as possible after symptoms develop--within 48 hours--in order to have an effect."

To relieve pain, the doctor may recommend over-the-counter analgesics (pain-relieving drugs), such as ibuprofen and naproxen, or prescription drugs, such as indomethacin, all members of a class of medications known as nonsteroidal anti-inflammatory drugs. Acetaminophen is also commonly used to relieve the pain. If pain is severe, doctors may add stronger analgesics, such as codeine or oxycodone.

When the Pain Persists

In some patients, the misery continues long after the rash has healed. Many of the 1 million people who develop shingles each year experience a complication called post-herpetic neuralgia (PHN). This term refers to pain that is present in the affected area for months, or even years, afterward. Although the acute pain of shingles and the chronic pain of PHN (called neuropathic pain) both originate in the nerve cells, their duration and the reaction to treatment is different.

Pain that occurs with the initial outbreak responds to treatment and is limited in duration. In contrast, PHN lasts longer, is difficult to treat and can be incapacitating. Furthermore, for unknown reasons, older people suffer more from this debilitating pain than younger people. In many individuals, the skin is so sensitive that clothing or even a passing breeze cannot be tolerated on the affected area. Described by PHN sufferers as agonizing, excruciating, and burning, the pain can result in an inability to perform daily tasks of living, and lead to loss of independence and, ultimately, depression and isolation.

"I would rather have ten babies than the pain I've endured for the past ten years," says 87-year-old Etta Watson Zukerman of Bethesda, Md., who has lost partial use of her right arm and hand due to nerve damage from PHN. "Nothing my doctor prescribed helped. I even went to a sports medicine specialist who recommended exercises. They didn't help either." Many PHN sufferers receive no relief at all, no matter what medications or therapies they use. And what works for one doesn't necessarily work for another.

Treating the Pain

Doctors use other methods to alleviate pain with varying degrees of success. "One of the relatively new medications that I'm enthusiastic about is the Lidoderm patch," says Veronica Mitchell, M.D., director of the pain management center and inpatient pain service at Georgetown University Hospital, Washington, D.C. "It's the transdermal form of lidocaine and it's been studied in the PHN population with very good results," adds Mitchell. "We prescribed the Lidoderm patch for a patient who had intolerable side effects with oral medications--and no relief--and she's had about a 50 percent-plus improvement in pain relief. It's one of my first-line therapies." The medication contained in this soft, pliable patch penetrates the skin, reaching the damaged nerves just under the skin without being absorbed significantly into the bloodstream. This means that the patch can be used for long periods of time without serious side effects.

Yet another method used to treat PHN is transcutaneous electrical nerve stimulation, or TENS. A device that generates low-level pulses of electrical current is applied to the skin's surface, causing tingling sensations and offering some people pain relief. One theory as to how TENS works is that the electrical current stimulates production of endorphins, the body's natural painkillers.

TENS is not for everyone. "TENS didn't help at all," says Einar Raysor of Rockville, Md. "I found there was a problem in fine-tuning the administration of the electrical current. Low doses of the electrical current didn't do anything for me. When the technician increased the current, it gave me a painful response. After this happened a couple of times, we dropped the treatment."

As a last resort, invasive procedures called nerve blocks may be used to provide temporary relief. These procedures usually entail the injection of a local anesthetic into the area of the affected nerves. "We have controversial results in the terms of the efficacy of nerve blocks," says Mitchell. "I do consider nerve blocks in treating PHN and I would perform them because there's some evidence that they work, but the real efficacy is to catch and treat the patient in the acute shingles phase. As PHN presents mostly in the elderly, and the older patient often is unable to tolerate some of the medications we use, I find nerve blocks useful in these cases."

Injection directly into the spine is another option for relief of pain that is not easily treated. A Japanese clinical study published in the New England Journal of Medicine found that an injection of the steroid methylprednisone combined with the anesthetic lidocaine reduced pain by more than 70 percent in one patient group compared with groups that received lidocaine alone or an inactive substance.

Just the Facts, Ma'am

Cancer is certainly an emotional journey.  But it is also a physical one.  I have been writing about the emotional side, and will continue to, but I thought that I should post about the physical effects of cancer and its treatments.  Most of you will find this post thoroughly uninteresting and the links useless, but I want to put this out there for any newly-diagnosed person who may stumble onto this site.  As a compulsive information-seeker, I wish a compiled list of things to expect and how to find out more about them had been available to me.  So, here is an extensive overview of the effects of cancer on one person's body.

* Updated 10/07/05 *

January 2004
Surgery:  Unilateral (one side) Salpingo-Oophorectomy (supposed to be both sides)
Result:  Diagnosed with Stage 2c Immature Ovarian Teratoma (Grade 3)

February 2004
Chemotherapy:  Cisplatin, Bleomycin, and Vinblastine (PVB)
Side Effects:  Anaphylaxis
Result:  Stopped after second treatment, allergic to vinblastine

March 2004
Surgery:  Salpingo-Oophorectomy to take out the ovary which was left behind by last surgeon (Don't ask)
Result:  Diagnosis changed to Stage 3c

March - June 2004
Chemotherapy:  Cisplatin, Bleomycin, and Etoposide (BEP)
Side Effects:  Hearing loss, tinnitus, diarrhea, shortness of breath, severe nausea, headaches, vertigo, hair loss, anemia, neutropenia (almost all attributable to cisplatin)
Result:  Slight slowing of tumor growth, but not enough

July - August 2004
High-Dose Chemotherapy with Stem Cell Transplant (Etoposide, Ifosfamide, and Cisplatin)
Side Effects:  All of the above plus more hearing loss, interstitial cystitis, shingles, peripheral neuropathy, severe nausea, neutropenia (which is quite the understatement, white cells went to zero), anemia, pancytopenia... Plus indirect long-term side effects such as pneumonia, arthritis, yeast infections, bone pain from neupogen injections, post-herpetic neuralgia and overall miserable-ness
Result:  Went through hell and back for nothing
(Side Note:  I want to impress firmly that I would never recommend this procedure unless you have leukemia or lymphoma, where there is a lot of evidence that it is highly effective.  Even then a serious cost-benefit analysis is in order.  I have found that many - not all - doctors are touting SCTs as the cure for just about everything but the common cold, and downplaying the serious risks associated with the procedure.  Okay, getting down from the soap box now.)

September 2004 - January 2005
Radiation
Side Effects:  "Sunburn" on stomach, fatigue, mild nausea
Result:  Temporarily slowed tumor growth but ultimately could not keep up with the progression

February 2005
Surgery: Resection of lymph nodes and partially obstructed bowel
Result:  Clean CT scan

March - June 2005

Chemotherapy:  Doxil
Side Effects:  Rash, weird skin reactions, low blood pressure
Result:  Disease progression

June 2005

Radioimmunotherapy:  Intra-peritoneal Yttrium Y90-DOTA-Tyr3-Octreotide (a.k.a. "Skronk")

Side Effects:  Nausea, fatigue

Result:  Tumor markers are currently down, will find out soon if it worked!

Other Treatment:  Begin hemodialysis to treat kidney failure.

July 2005

Surgery:  Endolymphatic shunts put into ears to correct fluid build-up causing deafness

Result:  Successful, I can hear, though not much.

August 2005
Remission at long last.
Maintenance Therapy:  Tarceva
Side Effects:  Rash, acne, fatigue
Result:  Jack

October 2005
Well, that was fun.  Recurrance.
Chemotherapy:  Arsenic Trioxide
Side Effects:  Too soon to tell
Result:  I'm not holding my breath

Note:  I have germ cell ovarian cancer, which is treated differently than epithelial ovarian cancer, the far more common subtype.  Most women with epithelial ovca are treated with Carboplatin and Taxol.  I don't know anything about those drugs.

I hope that maybe I have helped, just a little.  This cancer stuff can be hell on body and mind.

What Not to Say

For the record, I do not consider myself overly sensitive or easily offended.  But since my diagnosis, I have encountered some very off-base and ignorant statements made by otherwise well-meaning people.  To be fair, there is no manual for how to act around someone who has cancer.   There is no manual for how to have cancer either, I have had to learn lots of information very quickly. 

So for the furtherance of interpersonal communication and world peace, I offer my small contribution to the friends/relatives of those afflicted with cancer.  And to those naysayers who think I am just complaining, I have offered suggestions of what to say instead!  Of course, there is an infinite number of stupid things to do and say.  I could never cover them all... these are just the ones I come across the most often.

Stupid Thing #1:  "You look great!"
(Or: "You look good bald",  "You don't even look sick")

  The people who say this are not rude, maybe a little shallow, but they're not bad people.  They often think that by saying this, they are psychically or otherwise indirectly conveying a positive show of support, trying to say the illness has not gotten at the core of their wonderful friend.  But what they have ended up communicating is, "Who cares about a serious illness, at least you're not ugly!"  Because that would be the real tragedy.

Alternate:  "I'm glad you're still getting out and doing things with us even though you haven't been feeling very well."  "You seem to be taking very good care of yourself through this rough time."

Stupid Thing #2  "So, how are things going?"
(Or: "How are you doing?")

  This is the one that really drives me crazy.  These people refuse to talk about the elephant in the room.  We both know to which "things" they are referring, but they won't actually say it.  This forces the person with cancer to either a.) skip over everything actually going on in their life and say, "Fine and you?" or b.) be forced to be the one to bring up all the cancer stuff (not knowing if the person really wants to hear about it or not), and feel like they bummed everybody out with their lengthy explanation of their depressing life. 
   Generally, I would say these people ask because they do want to know what is really going on.  So cut it out with the vague social-nicety shit.  If you want to know, ask.  I would not be offended if someone cut to the chase and asked me about my treatments or side effects, and I don't think any reasonable person would.

Alternate:  "How many more treatments do you have left?"  "Have you been feeling very sick from the chemo?" 

Stupid Thing #3  "You'll be fine!"
(Or: "Miracles happen every day!",  "Everything will work out",  "Don't worry!", and other assorted Pollyanna bullshit)

  This is one of the rudest and most dismissive things to say to anyone, cancer-related or not.  When someone suffers a setback or takes a turn for the worse, this needlepoint philosophy is of no help, in fact, it is damaging.  It dismisses another person's valid thoughts, fears, and concerns.  Furthermore, you have made them feel bad about having those thoughts.  A person who worries about their condition is not faithless, but they do need the opportunity to discuss their fears with someone who will listen.  Do not cut them off because you are too scared to face the fact that everything might not turn out hunky-dory. 
   Plus, there is the issue that... gasp... what if that miracle doesn't come?  False hope can be crushing, and the fact is life does not always work out all right.  So really you are disseminating false information at best.  Don't shut out someone who needs to talk about what they're afraid of.

Alternate:  "Sorry to hear <insert bad news>, do you want to talk about it?"  Or a simple "That sucks!" is often very effective.

Stupid Thing #4  "At least you're alive!"

  This person does have a point.  I would much rather be alive than dead.  But just because I am still alive does not mean I am just going to roll over and take all the shit "life" throws at me from this point on.  Even without a serious illness, bad things happen that cause you to worry and get pissed.  Add the complication of cancer and the unique set of problems that adds to your life, there are things that are worthy of being complained about.  And I don't feel like I should have to wax over them just because I'm alive.

P.S.  You are alive, too, so does that mean you never bitch/worry/complain?  Why the double standard for a cancer patient?

Alternate:  See suggestions for #3. 

Stupid Thing #5  "...." (Nothing)

  The quote says, "The friend who holds your hand and says the wrong thing is made of dearer stuff than the one who stays away."  I bet somewhere out there, a lot of people are thinking of me and wishing me well.  Of course, I can't say for sure because they haven't called in months.  Ultimately, that is infinitely more painful than some silly, misguided question or remark.

Alternate:  Call the person once and a while, you don't even have to mention cancer.  Talk about what is happening in your life.  Or every so often, send an email or card, this will tell them you're thinking about them, even though it may be uncomfortable for you to see them.

Take your cues from your friend.  Make yourself available, but don't push too hard.  Since everyone is different, it is always best to listen and learn from your friend, they will let you know what they need... if you pay attention.  If you act and speak with support, respect, and love, you just can't go wrong.

What Are the Odds of Being Me?

Population of the world:  6,497,421,500  (as of whenever I checked it)

Approx. Female Population of the World: 3,086,275,212  (1.05 Male: Female)

Approx. Women Who Will Get Ovarian Cancer During Their Lifetime:  54,145,179 (1 in 57 women)

Of Those, How Many Will Be Germ Cell:  10,829,035  (~20%)

Of Those, How Many Will Be Cured by First-Line Therapy:  10,612,455 (~98%)

Leftovers (Like Moi):  216,579

Therefore I represent .0033% of the population.   Someone once said I was one in a million, but it turns out it's more like 1 in 30,000.  Now where are you my 216,578 kindred sisters??  Speak up!

Well, when I started this mathematical stunt, it seemed like I had a purpose to it all.  It just shows that statistics, while amusing, don't prove a damn thing.  Sure, 98% of people with the same diagnosis as me are cured with first-line therapy.  But I wasn't, so that 98% isn't really keeping me warm at night.  Then on the other side of the coin, there are people who were told to get their will together, and they are still going years later with no recurrances. 

If I could go back in time and tell anything to my just-diagnosed self, it would be not to listen to any sentence that begins with, "Studies have shown that..."  Either something will work for you, or it will not work for you.  It's 50/50 no matter what the fancy number-crunchers came up with to sell it to you.  Oh, and I probably would have given myself some future winning lottery numbers, too.

P.S.  In my thirst for accurate statistical data, I found this cool thing.  World Population Clock

Reader's Digest Version

Let's start at January 12, 2004.

I went into the ER with the worst cramps of my life.  I had cramps before, but these were different.  After passing out, two ultrasounds, and two CT scans, I was rushed into surgery.  Upon awakening, I was told that the pain had been from internal bleeding, and the internal bleeding was from a ruptured tumor on my ovary.  Oh yeah, and it was cancer.  I was diagnosed with immature germ cell teratoma of the ovaries.

Since then, I have had three courses of chemotherapy, high-dose chemotherapy with a stem cell transplant, and two courses of radiation.  I am still not in remission.   It has been difficult, I have given up my career in the military, lost many friends, and suffered because of my medications.  But without these sacrifices I wouldn't be alive.

I am not strong, amazing, special, or remarkable in any way.  I am an ordinary person with an extraordinarily large pain in the ass.  People sometimes say to me, "I don't know how you go through all those horrible side effects" or "I couldn't handle what you go through."  But the fact is, they just haven't had to handle it.  I've certainly thought about giving up and stopping treatment, but instinct tells you to stay alive at any cost.  If someone broke into your house intending to kill you and you had a gun... maybe you could not fight and maybe you would go to Heaven like people say and it would be infinitely better than where you are now... but don't kid yourself, you'd shoot him.