Cancer Light: September 2011

Friday, September 30, 2011

The Fragility of Emotional Balance

I met with my oncologist Wednesday morning. There is one thing I still don’t understand so I asked: If I have limited disease, locally-confined cancer with a clear PET scan, why am I undergoing chemotherapy? Is it because of the type of cancer – small cell?

Yes, she replied. This cancer is rarely found in the bladder, most often in the lung. Small cell cancer has only two classifications: limited disease or extensive (metastasized) disease, but it is always considered a systemic cancer. This is because the “small cells” are neuro-endocrine carcinoma cells. Embryonically neuro-endocrine cells form into all the glands as well as the neurological system. So it is possible for there to be lots of these microscopic villains hanging around which cannot yet be detected by a PET scan. Thus, chemotherapy to poison them wherever they may be lurking.

For some reason, this information caught me completely off-guard. It brought home to me the seriousness of my cancer. It doesn’t alter the optimistic prognosis one iota. But somehow this more explicit information took the wind out of my emotional sails – again! I was planning to go to work, but I could not get ahold of my tears.

Denial is a nice companion. Then another rock is upturned and I see what is under it. Smash! Those are my emotions splat all over the place. No physical pain, no nausea. But the daily bouts of weeping are exhausting.

That is the thing about my condition: it’s the emotions that are the trickiest part. Similar to grief, they surface whenever they feel like it. Unannounced. And they don’t drive away on the freeway. They meander on winding back roads so that regaining even a small measure of emotional balance is elusive.

Part of it is so many utterly new experiences in the span of just three weeks. Another is the intensity of the experiences. Yet another is the unpredictability of the experiences and the information. And I don’t have cigarettes anymore; I have long viewed smoking as helping me manage my emotions.

I am surprised that I cannot talk about my experiences or emotions with anyone other than my husband. Even with a sister who calls frequently and ends each call with, “OK, honey, love you.” I let her calls go to voice mail and ask John to let her know how much I appreciate her thinking of me but that I just cannot talk about this.

Instead I stay awake late into the night to find the necessary stretch of solitude to come to terms with my emotions, to ponder, to pray, to write. And then I am like a newborn who has her days and nights mixed up. “Oh, Mama, I wish you could hold me and rock me,” the infant cries plaintively.

Tuesday, September 27, 2011

Monday's Pity Party

My Monday pity party went like this: After I actually showered - yay Jean! - I headed off about 1:30 to the oncology clinic to give a urine specimen because I had burning with urination. My nurse last week said come when you can so I came when I could. Oh horrors, no doctor's order! The receptionist, a woman about my age, said my full name and spelled my last name three times in front of the other patients in the waiting room while on the phone to someone else in the clinic. HIPAA, schmipaa. Finally she got the order.

I took my teeny tiny container into the restroom and opened it, opened the wipe, lowered my pants, used the wipe, let a little urine flow then tried to stop it (right!) and then positioned the teeny tiny container. But Pavlov’s dogs were with me the entire time and so I “peed up a storm:” on the toilet seat, in the toilet, in my adult diaper, on my pants, down my leg, onto my shoes and the floor - everywhere but in the teeny tiny container designed only for men and for skinny young women without bellies who might actually be able to see what they are doing down there. I turned on the faucet for any assistance running water might provide but all the urine was out and Pavlov’s dogs were long gone.

I began to clean up myself and the room, and to cry. Which apparently cancer patients are not allowed to do if I gauged the receptionist’s response correctly. I thought I had my tears under control but when I came out of the restroom with the empty container I started crying again. I said to the receptionist, “Sometimes having cancer is a real pain in the ass.” She looked at me while glued to her chair three feet away and asked if something was the matter. Should I have said “urethra” instead of “ass?” I don’t know what I replied to her incisive question because by then I was bawling. Fortunately she got the lab woman back, also a woman about my age, who was wonderful, “got it” immediately and said soothing things without patronizing me. She noted that men have it so easy with their apparatus. She gave me a new teeny tiny container and told me to return it when I had an inch of urine in it.

I started to head home but determined that I was not driving all the way there and back, that I was going to park in the lot shared by a nearby coffee cafe and pasta place, drink the pint of water in my car and get this done with. After 45 minutes of no response I figured I’d eat at the pasta place and take in some more liquid - a pint of really tasty lemonade!

After another 45 minutes I felt an urge - yay! - so I took my bag of goodies which now included a plastic “hat” to put under the toilet seat if needed to catch my errant urine. But I thought if we are looking for bacteria here, urine from the hat will be per se bacterial so maybe I’d do it the intended way. But I couldn’t get the door closed before Pavlov’s dogs raced in and so I had urine in all the same places as at the clinic.

I didn’t cry this time. Big girls don’t cry. Cancer patients don’t have sudden, unexpected expressions of emotion just because they are urinating everywhere.

I came back to finish my delicious pesto pasta only to find the bottle of lemonade standing in lonely sorrow because they took my pesto to the mass pasta grave. At least I’d eaten the chicken. But having been toughened by Ms. “Is something the matter?” and motivated by the grieving lemonade, I called attention to my plight and they immediately made me another dish of pesto pasta. Things were on the upswing. I changed tables to a booth nearer the restroom so I had a better chance of beating the Pavlovians. Upswing, schmupswing. The configuration of the booth bench to the booth table was perfect for allowing the pesto to plop right onto my newly washed linen-colored (hmmm, maybe egg-shell white) sweater.

I went home, what was the use. After three tries and by 5:30 PM and with the help of the hat, I finally provided a worthy sample in the teeny tiny container designed only for men and for skinny young women without bellies who might actually be able to see what they are doing down there.

Anybody ever thought of a sterile little funnel for women to hold in the general vicinity and aim down into the teeny tiny container? How about the configuration of my husband’s mousse container: two inches across and two inches deep? Doesn’t anybody remember how much easier it was to fill a wide-mouth canning jar than one with a regular-sized opening? Aren’t there any women in these design departments?

Saturday, September 24, 2011

Autumn Chrysalis

So many friends and family members have been doing things for me.

Every loving act, email, gift, joke, morsel, card, intention, flower and prayer has reached and enriched me. It is no longer 1 + 1 = 2 but 10 x 10 = 1000s. I not only feel uplifted but spiritually protected as if I am ensconced in a beautiful, etheric, diaphanous chrysalis woven of the very finest strands of white light in an exquisite pattern of holiness so sublime that words cannot describe it.

There is much to celebrate and for which to be grateful:

° John looks after me in every way, accompanies me to all treatments, does almost all of the housework, makes meals, heats up gift meals, loves me awake and loves me to sleep. To see myself through the eyes of his love is a powerful gift. “What have I ever done to deserve...?” (Kris Kristofferson)

° My cigarette smoking (off and on since I was 16) could have resulted in lung cancer, a much worse situation. Instead I have limited-disease bladder cancer (a cancer also associated with smoking) which can be cured.

° My disfigurement will be limited to the lengthening of my abdominal scar and a little stoma.

° I have a beautiful autumn day like today: good rain for the flora followed by sun in time for the UW Badger football game.

° I am down to only one pity party a day.

° I have figured out how to take my as-needed meds effectively.

° My lab results this week were great.

° I only have to have one needle poke a week.

° I am increasing the profits of the manufacturer of Depends.

° My dear son-in-law will be here with us in ten days.

So What's Chemo Like, Anyway?

As preparation for chemotherapy, a medi-port was placed 10 days ago during conscious sedation about three inches below my right collar bone. (The nurse said that during the entire procedure my mouth was slightly open and I was smiling.) It is akin to the placement of a pacemaker only my device is shaped like a heart (awww) and is the size of my thumbprint. It has a tough plastic center into which a needle can be inserted. From there blood can be withdrawn for my weekly lab tests.

As importantly, all chemo liquids infuse through the needle into a catheter attached to the device which courses under my skin into my descending jugular vein in the side of my neck. The catheter continues into the descending vena cava, that part of the huge vein which receives all the blood returning to the heart from the upper parts of the body. The catheter continues downward into the opening of the right atrium of my heart. Thus, all IV fluid that flows in from the port pours into a gulf rather than the creek of a regular vein, saving injury to the lining of my veins from the caustic chemo drugs.

My first three treatments on Wednesday, Thursday and Friday were fine. The infusion room is on an upper floor of a medical center. The room is large and shaped like an “M.” The nurses’ station is in the middle of the room and along the outer walls are six areas each containing six easy chairs so that at any one time 36 people could be receiving chemo. I have never seen more than 10. There are strategically placed artificial but attractive greenery to provide additional privacy between the six areas. But it is a solemn and serious place. The nurses don’t interact much with us. Few people smile or even return smiles. On the other hand, maybe I am one of the blessed few who has such a strongly positive prognosis.

I choose a chair in the farthest area along the last side of the “M” facing northeasterly. Through the large and plentiful windows I can see the lake, the basilica, the largest four-sided clock in the world (take that, Dubai), the downtown buildings which form our skyline and the top of the courthouse, plus hundreds of treetops. Not many people sit this far back so it is quite private. Being steps away from the restroom doesn’t offer me any benefit because I can’t ever get there in time.

I take along a rosary we got last year in Rome that looks quite similar to one of the rosaries my mother had while she was alive. I keep it in my pocket which is in the vicinity of my second chakra (within which the bladder is physically located) and imagine it as an antenna to receive the blessings I know she is giving me from across the veil with her rosary.

I sit in my eggplant-colored chair and an RN comes to get me started. My regimen (everyone’s is different):

° 1 hour to infuse1 liter of normal saline (NS). (NS has the same concentration of saline as in the blood, 0.9%). My liter of NS is fortified with potassium and magnesium because these tend to be washed out by the chemo agents.

° After half of this bag has infused, 60 seconds to push into my IV line 20 mg. of Lasix, a diuretic. This is to make sure the fluids are perfusing all of my body and being washed out through the kidneys, so that there is confidence that the chemo drugs also will perfuse my entire body but will then be washed out through the kidneys before they do damage to other organs. Calling all Depends!

° ½ - ¾ hour to infuse Aloxi in 150-250 ml. of NS followed by Emend in 150-250 ml. of NS. These are anti-emetics that last for three to five days (yippee!). One of my chemo drugs has a reputation for being very emetigenic. (Isn’t that a great multi-syllabic word?)

° ½ - ¾ hour to infuse in 250-500 ml. of NS which has a very strong steroid (10-20 times more powerful than prednisone) in it called Decadron. Its purpose is to lessen my body’s reaction, including nausea, to the chemo drugs.

° Ah, finally the chemo drugs: one hour to infuse cisplatin in 500 ml. of NS followed by one hour to infuse etoposide in 500 ml. of NS.

° Ten minutes to rinse the line with NS.

Then I am disconnected, my port is bandaged and I am done.

Since the two IV anti-emetics each last at least three days, I only get them on Wednesday and therefore that day is a five-hour affair, Thursday and Friday a little less long.

The anti-emetics are good. The steroid is fierce! It makes me crazy by Friday: emotionally overwrought, manic, irritable, grumpy, crying for cigarettes. This wacko feeling goes on for a couple of days. Plus I am all swollen up and feel quite pathetic overall. By far the worst experience of the cycle.

Then I feel a low-level nausea for a several days: 1 on a scale of 1-10. As has been the story of my life, this does not prevent me from eating. Nor does the episodic heartburn. Nor the odd taste in my mouth.

I was able to go back to work a week later for three days. That was really good for me, feeling part of the stream of humanity again.

To go back to work and feel this good after only one week is wonderful. I wasn’t supposed to feel good until later next week. It bodes well for the next three rounds, although I know it will become progressively more challenging.

Wednesday, September 14, 2011

Great News!

The results of my PET scan: No evidence of cancer anywhere else in my body! This makes no difference in the course of treatment :( but does enhance optimism about my prognosis and defines the disease as locally limited (non-metastasized).

My first chemo treatment today - 5 hours - was just fine if perhaps a little boring, although who’s to complain after the heavy doses of information since last Wednesday. And how is this for a blessing: My chemo RN today is masters-prepared and the daughter-in-law of one of my friends.

Friday, September 9, 2011

The Real Scoop

Things are happening rapidly. The oncologist to whom my urologist referred me re-arranged several appointments in order to see me the next day. It turns out that the massive surgery - full abdominal opening, two surgeons, several hours removing my bladder, creating a new internal bladder from the tissue of the small intestine and then sewing the intestine back together, connecting the new bladder to my ureters and creating a little stoma into which I will insert a little catheter 4-6 times daily to drain the urine, followed by an amazing (by today’s standards) 7-10 days in the hospital post-operatively - is merely “local treatment.”

The cure treatment is chemotherapy and lots of it. I start right away next Wednesday and will receive big-time, full-body chemo for three consecutive days, followed by a week of feeling like shit, followed by a week of feeling a bit better. Repeat for three more rounds. This is a search and destroy mission for any miscreant cells anywhere in my body. My daughter disagrees. She views it as a mission to flood and saturate all areas with poison. I think she may be right.

I will have a medical port placed first where they will hook up the IV each time because they weren’t too thrilled with the veins in my arms. Also a PET scan Tuesday. This is a nuclear test that highlights any cancer spots, even polyps, anywhere in the body.

I will lose all my hair with the second round of chemo treatments. I was shocked by this news! I never imagined that wig shopping would be in my future. They advised that the “real key” is to get it ahead of the need and take it to my hairdresser to have her cut it so it looks like me. I have disliked my hairstyle for a few months now, so we’ll see about that. I was given a catalog to get some cool scarves and other swanky head attire. At least there is an online shopping spree ahead.

May I hope for a weight loss benefit as well?

Only after I recover from the four rounds of chemo, which will end the week before Thanksgiving, will I have the “local treatment.” So a December surgery.

This news knocked the wind right out of my sails. I thought the chemo was only once weekly for four weeks as a prep for the big surgery. Surgery I can do; after all, my August 31^st surgery was my fifth in five years. But full-blast chemo - yikes!

I will go to chemo next week with John the first two days and my daughter the third day just so that she sees what this is about. It will give her a visual and experiential point of reference in future conversations.

Then I want her and John to get on with their lives and let me deal with this without our family life being led by my illness and treatments. I need their love and support but also the normalcy they can bring by living their lives.

Wednesday, September 7, 2011

Breaking the "Big C" News: To Others

I email extended family and friends.

"A number of you know that I had several episodes of blood without bacteria in my urine during the last two weeks before our daughter’s wedding. After a number of diagnostic tests in August, I had surgery a week ago to remove an abnormal growth in my bladder and to have two biopsies from two different areas of the bladder wall.

"Today I learned that the pathology reports reveal a very rare (<1%) and very aggressive form of bladder cancer. The cancer has just begun to invade the muscle wall of my bladder nearest the tumor; the other biopsy was clean. My urologist says this cancer was caught as soon as humanly possible. Still, I will require full-body chemotherapy for about a month before undergoing surgery to remove my suffering little bladder and build a new one. That surgery will be an extensive one requiring at least one week in the hospital post-operatively.

"My trip to Spain later this fall with my travel mates is off, of course, and I doubt that I will be back at work before 2012.

"I feel very badly for my daughter, whose husband is still in Australia until at least October, because this will be very stressful news for her to digest without him and comes just after she re-commenced her nursing studies.

"I am a tough cookie and will get through this. John’s and my love is deep and abiding and together we will face what I believe is a very optimistic outcome.

Having said that, I certainly will appreciate your prayers and good thoughts and energy, not just for me but for John, Anne and Tom. Sometimes it is harder on the family than on the patient."

Then Anne and I tell Tom via Skype. He is very sad but glad to hear the cancer can be removed completely. He wonders if it is from fatigue; while here after the wedding he commented to Anne that I was like a cat because of my frequent naps. No, I reply, not fatigue. But I don’t dismiss the idea that the last three months of intense stress leading up to the wedding may have been a factor in bringing the symptoms forward, and I can only be grateful for that since it led to an early diagnosis.

Breaking the "Big C" News: To Me

Ever since the extraordinary egret sighting in July, I have continued to seek any indication that this is other than what I think it is (a contained, non-invasive abnormality). I have a deck of divination cards which I am trained to use, and draw after draw during these two months has been not only unfailingly positive but exceptionally so. My dear friend who is energetically gifted has the same sense. All signs point to a positive outcome.

Indeed, I am confident enough that I urge my husband to go out of town with his friends for a previously scheduled 3-day golfing opportunity. I will go alone to get the pathology results.

The night before that appointment I weep again and feel profoundly lonely. I cannot reconcile this experience with all the positive signs, any more than I can reconcile my sobbing before surgery and again on the night after surgery while on my deck where I often go after dark to contemplate the spirituality of my day.

And now I cannot find an upbeat note to hang onto while waiting the hour before my doctor comes in to talk to me.

“How did you do after the surgery?” she asks. “Just give me the results,” I respond. She gives it to me straight, unvarnished, but not without compassion. It is bladder cancer of a very, very rare and very aggressive type and it has just begun to invade the wall of your bladder. This will mean chemotherapy before an extensive surgery.

What?! Despite my episodes of foreboding, I have clung more strongly to the indications that this will be okay, so I am nonplussed. (I weigh too much to have been knocked over with a proverbial feather.)

The nurse who works with my urologist sits very close to me, leans in toward me, touches me, all of which comfort me. Nonetheless I express my surprise and feel my emotions well up. They stay with me and allow my emotions, my tears, my comments, my questions. I have the luxury of as much time as I need with them. I feel their caring, and I feel safe with them. They allow me to choose an oncologist among four, and give me an article about my cancer, urging me not to look up more on the internet. I trust them and so I don’t. The article is up-to-date and mirrors my doctor’s statements.

John is far away but is expecting my call. He is silent with the news but I intuit his reaction. He asks if he should come home. I hesitate. I want him to enjoy his friends, one of whom he rarely sees and just recovered from prostate cancer. “Yes,” I reply. He is back at the airport in jig time for a 5:00 PM arrival back home. Knowing he will be with me within hours gives me the strength I need to gather myself together and get myself home.

The valet is from England and I mistake his accent for Australian since my new son-in-law’s accent is Australian with shades of British. He gives me special attention and cheer as he helps me into my car. Every little bit helps, and I consider him a blessing.