An N-H Lymphoma journal

Last chemo session is tomorrow

2006-07-02T11:30:00.000-07:00

I know that my few regular readers noticed that my postings had dropped off significantly. In a way that's good news. It had all become routine without all that much to report. Tomorrow is my last chemo session. I'll go in for the last time tomorrow morning at 9 am. Hooray.

Before the session three weeks ago, Dr. O the oncologist, came in to report the results of a CT scan that I'd taken on the prior Thursday. "I have good news." She couldn't detect any clear signs of swollen nodes within the abdomen. Tomorrow's session is therefore just a kind of protective measure in case something didn't show up on the scan.

So, it's gone. No more lymphoma. It all seems from this vantage point that it was not a big deal. I'm still more tired than usual. I still have problems walking up hills. But at least I now know that those conditions are caused pretty much entirely by the chemo drugs and not by the cancer itself.

I've even started to get fuzz on my head that appears to be relatively widespread without too many obvious blotches.

But there are a couple of other reasons for the dropoff in postings. For one things, I've been busy for the past two months with tasks for a non-profit group at which I've volunteered for years. I manage their website and do print graphics for their big annual fundraising party. I switched the website over to a new host and prepared -- with much email deliberation -- the graphic "look" for the part before preparing the many posters, mailers, fliers, and related material.

So that's kept me busy. But a more significant change transpired when someone that all of us in the family was diagnosed with breast cancer. Because she wouldn't want to be identified any more clearly, I'll call her "M".

M didn't really want to tell anyone about the cancer. At one point when I asked her why she wasn't reading the brochures the doctors had given me, she said to me, "I don't want to become one with this cancer."

Fair enough. But many of us worried that she wasn't yet prepared to do what it would take to "kill bill" as she has named the critter.

While all that was happening, it seemed a bit self-indulgent of me to post these entries. So I stopped for a while.

But M is now in chemo, getting session every other week. She reports

All is well, the second Chemo was this last Tuesday, it's not so bad...compared to bull fighting. No really, it was not bad at all. It just kicks the crap out of you for a few days...like a bull would too. Otherwise, not bad. Food tastes funny...but I'll eat my peas with honey, I've done so all my life it makes the peas taste funny but it keeps them on my knife!!!

Yup. Comapared to bull fighting.

Finally getting the mid-point CHOP treatment

2006-05-02T12:52:00.000-07:00

These are a few notes I recorded yesterday:

From a [Monday 1:35 pm] email to sister #4:
I'm sitting in the infusion room now about to start chemo... And now 2/3 of the way through it. The platelets came up just enough today to get it started. It was a busy day here today that's only now starting to settle down. Fortunately, I thought to head down to the cafeteria to get a sandwich while waiting for labs and the chemo go-ahead.

[Monday 1:45 pm] I'm been in the infusion room since 9:30 this morning, but the third of the three drugs that drip into my new chest-spigot is on its way into my system.

My platelet count was up just enough to risk the chemo.

It's been a busy day in here today with two people dropping in complaining of severe nausea after chemo sessions.

[Tuesday 3:20 am] good thing i heard those nausea explanations. i just threw up.

The infusion room was packed when I arrived at 9:30. The guy who usually checks us in from a desk on the east side of the room was off for the day. The three already-busy nurses on duty had to fill in for check-ins and to run blood samples down to the lab on the ground floor.

The infusion room is on the sixth floor of the original hospital building. It's wedged into what was intended to be a four-bed hospital ward and is one of the rooms that demonstrate how necessary it was to build the new buildings that are rising just across the street to the east of this ward.

Five large easy chairs are arranged along two walls on the west and north side of the ward. Three desks with computer monitors for the nurses, scheduler, and on-staff pharmacist are jammed along the south and part of the east wall of the old ward. A standing-height island with medical supplies is positioned in the center of the room with a wide supply cabinet just to the left of the door on the east wall.

One of the patient easy chairs is positioned so that a walkway for the nurses is blocked if the foot risers of the chair are extended into the full lounge position.

There is very little room for visitors, so if anyone brings along family members, the whole place becomes even more cozy for everyone.

It was so packed that my regular nurse had to install what I call the spigot into my port while I was sitting in the check-in chair so that she could draw a blood sample. To do that, she applies just enough lidocaine to deaden the area. I don't feel a thing when she inserts a large needle into the access port. Even though the skin that's stretched tight over that port is still somewhat sensitive, it seems to have be a worthwhile alternative to the regular search and poke to find a "good vein" that would otherwise still be necessary.

So when I say "packed", I mean it. After getting the spigot installed and getting the blood drawn, one of the chairs opened up. I grabbed it. And waited. And waited. It was becoming clear from some comments of nurses to each other that the lab was equally busy this morning.

One of those waiting uncomfortably was a young Hispanic man. He seemed eager to give up the easy chair he sat in, but the nurse told him each time, "No. Stay. We're working on getting a translator." He speaks no English and the hospital's translator service was being as inefficient as ever.

When a translator finally arrived, I listened even more closely than I usually would because I realized I didn't know how to use the nausea pills they'd given me after my first chemo session. Like the young guy in the chair next to me, I hadn't had trouble with nausea after my first two sessions. But my neighbor described through the translator significant problems after his third sessions. "I hate to call my boss and tell him that I can't get to work, but sometimes it's so bad, I just can't get there."

The nurse and translator explained that he should now take one of the pills (the one shaped like an American football) twice a day even if he wasn't feeling sick. He could take the small white pill up to eight times a day if he felt like he was even getting close to being sick.

With a good translator present, the guy poured out a number of other questions like, "Why am I always so tired." (Nurse: "I'm afraid there's nothing we can do about that. You'll just have to rest as much as you can when you're not working.") "Why do I have to wait so many days before getting another treatment?" ("This is complicated," the nurse said to the translator who conveyed something like that to the patient. The nurse explained the notion of "protocols" and "what works" and then the translator did what seemed to be a good job of conveying as much as possible of that to the patient.)

As the patient was leaving, the nurse said to him through the translator, "I admire you for trying to work every day through this. Come back here if you have any more problems. We'll get a translator next time even if we have to do it over the phone."

I've seen the guy a couple of other times in the infusion room, always before this without a translator. He always seemed confused and just a little frightened. As he left yesterday and for the first time that I've seen him here, he smiled as he left.

(And, it occurred to me that this ambitious young guy who is so worried about missing a shift at his restaurant job because of chemo treatments would be one of the first folks that Lou Dobbs and the politicians he speaks for would like to see run out of the country.)

While waiting for the labs and listening to the nausea-med instructions, I realized, incongruously, that I was getting very hungry. I'd forgotten to bring cash with me this morning so I checked my wallet to see if one of the cards might have enough cash available to get a sandwich and to get the co-pay fee for the drugs they'd give me after the chemo. I found one and headed down to the cafeteria with a stop at a bank machine. (Oh, my... In front of me was an ATM customer who tried out several cards in the machine until she finally, slowly, found one that worked. Sigh.)

With two sandwiches in hand, I headed back to the infusion room where I found my favorite chair open. I set up the laptop just in case even though I was feeling tired. By then the nurses had gotten permission from Dr. O to go ahead with the chemo even though my platelet count had made only a slight jump. There had also been a delay getting the chemo drugs -- I imagine that was partly due to the two delayed sessions from last week.

As I began to eat a sandwich and crunch on chips, the chair next to me was taken by another guy who complained of the same sort of nausea that its prior occupant had suffered. He had tried to take the pills as directed but was worried that he hadn't been able to keep them down. The nurses, after consulting with his oncologist, decided to give him a fluid drip with some anti-nausea meds added in. He had also gotten through his first couple of sessions without nausea.

"This isn't a good sign," I thought as I waited for my delayed third chemo session. I tried to munch my sandwich as quietly as possible as the fellow next to me explained his symptoms.

The nurse attached a fluid drip to my chest spigot as we waited for the actual meds which were finally delivered at about 1 pm.

The protocol used for my chemo treatments is called CHOP, which was, at one time, an acronym for the four different medications delivered during the tri-weekly chemo sessions. The four drugs are now more commonly called Cyclophosphamide, Doxorubicin, Vincristine, and Prednisone.

Many lymphoma patients are now treated with a modified regimen called rCHOP or CHOPr [for those who prefer an Easy Rider style]. This regimen adds another medication called Rituxan to the mix. But Rituxan works only with the most common form of lymphoma -- diffuse large B-Cell lymphoma. It doesn't work at all with the form of lymphoma I have, so it was wisely left out of my regimen.

Only three of the drugs are administered during the infusion session. I take Prednisone in a nasty-tasting oral pill for five days in the morning after the chemo session. Two of the drugs are added to the drip tube by a nurse who slowly squeezes the liquids out of a large syringe type device. One of those is Vincristine, which is a red liquid that turns the pee a deep orange for a few hours after it's administered. Before the central line was attached, the nurse had to closely monitor the vein where the IV was attached to make sure the drug didn't leak into surrounding tissue. This is no longer an issue with the central line dangling into a major vein.

Another of the drugs is administered with the help of a drip-pump along with fluids into the vein.

I've found nothing painful or bothersome about any of the three chemo sessions I've experienced. I was tired yesterday during the chemo session and even fell asleep a few times in the easy chair. As I've been after each chemo session and transfusion, I was very tired when I returned home and slept for several hours before retiring for the night.

But until last night at about 3 am, I hadn't experienced the kind of nausea that can be so debilitating for some chemo patients. Even last night, I vomited a few times, took the indicated pill, and then slept through the rest of the night. No problem so far today, but I'll take another of those football-shaped pills in about an hour and another one tonight -- just in case.

Yesterday's chemo session should be about the half-way point in my treatment. When my sisters and I met with Dr. O last Tuesday, she said she's hopeful because of my quick and apparently permanent response to the first chemo session. She explained that after the fifth session, they'll run through the same set of tests that they ran after my initial diagnosis. That would mean a CT-scan and -- probably -- another of those bone-marrow biopsies. They'll be looking for remaining signs of the cancer and will stop at six treatments if they find nothing.

So all of this is mostly hopeful. But behind it all lurks the notes I've heard and read about the problems with predicting the course of the kind of T-Cell lymphoma that I have. Fewer than one percent of non-Hodgkins lymphoma cases involve things other than the B-Cells of the immune system. With so few cases, there is far less clinical history to predict things like long- or short-term complications of the disease and its treatment.

But, so far, it generally feels good. I'm starting to worry now about getting off this chair and getting a job in a month or two. It's time.

Getting an IV port in my chest #2: The operation

2006-04-30T11:36:00.000-07:00

Our portacath adventure which started here, continues...

As we waited for an empty car in a sixth-floor elevator lobby during lunchtime rush, the hospital transportation worker explained to my sisters and me that the short bed is called a stretcher and is made to fit into any of the hospital's elevators. And it did fit -- just barely -- into the central elevators which are rarely used for this kind of thing. We headed to the building's maze-like basement which connects all of the spread-out wings of the facility, even passing in a tunnel under a city street at one point.

We headed into an area that I think was on the south side of the hospital's original building. I don't recall the name and I wasn't able to find the door when I walked through the basement hallways yesterday. Maybe it was in a different area of the basement.

My sisters were directed to a waiting room. (They ended up doing a lot of waiting in various areas of the hospital during their visit. Fortunately, both of them had laptops and/or other devices to keep them connected with their jobs.)

I was wheeled into an area that's called something like "Special Procedures Unit". I was deposited in a short equipment-filled hallway just outside double doors that I recognized as typical OR entry ways. Two friendly nurses came over to check my plastic ID bracelet and start and IV drip. Shortly thereafter a young woman introduced herself and said she'd be "performing the procedure." She then explained what would happen in relatively elaborate detail. "We'll be giving you a local anesthetic. You'll feel some pulling and pushing on your skin, but you shouldn't feel any pain. If you do feel pain, tell us immediately, and we'll take care of it."

She warned me, however, that I would feel pain for several days in the area where the port would be placed. She assured me that ibuprofen is usually the best solution to deaden the pain. She then gave me several consent forms to sign before I was wheeled through the double doors into the procedure room.

This room wasn't nearly as bright as the OR I'd been in for the biopsy. But what it lacked in lights it made up for in equipment. My first thought was "Frankenstein!" as I surveyed the complex tracks on the ceiling with an x-ray camera hanging from one section along with the long narrow bed standing on a single high pedestal in the center of the room. I was asked to climb off the short stretcher onto the long thin bed. Even though the bed had been hydraulically lowered, it was still just barely low enough for me to get onto it. They raised the bed after I was situated.

Two nurses attached plastic troughs onto either side of the bed and placed my forearms into the troughs. The technician said, "We won't be strapping your arms down yet, but don't move them under any condition." It was clear to me that they would strap my arms into the trough if I ignored this injunction. "Tell us if you have any kind of itch, and we'll take care of it."

One of the nurses appeared with a razor and explained as he was doing it, "We're shaving your chest so that the bandages that we'll put on later won't pull on the hairs." It wasn't a choice -- not that I would have objected. It was just an explanation.

This was a friendly crew in the room. They joked easily with one another, but didn't come across as anything less that professional. I've found this sort of friendliness to be common in this hospital (as long as you're not trying to call someone on any number that goes through an operator).

"Your world is about to become very blue when we put a blue hood over your head," the technician said. "Tell me if you have any problem breathing." As she explained it and asked me to lean my head to the left, one of the nurses expertly positioned the blue hood over my head, leaving a wide space in the back for air circulation and a small porthole to my left through which I could see a small portion of the room.

I'd later recognize this and the heavy blanket that had been placed over my lower chest and groin as lead blankets to protect me from the x-rays to be taken of my chest during the procedure. That part of the procedure had not been explained, but I knew that this unit was part of the radiology department, so it wasn't all that surprising.

Now that the prep work was complete, I heard the technician say for the first of many times, "You'll feel a needle prick and a tingling sensation." She said it again and again as she deadened a widening circle on my upper left chest. Dozens of injections. By the end, I could barely feel the needle as it was inserted.

"Do you feel any pain?" she asked. I didn't. Perhaps a bit of pressure on my chest. But nothing even close to pain. She might have asked that as she made the incision. I'm not sure.

The technician had warned me out in the hallway that I'd feel some pushing and pulling as she separated tissues under the skin to make way for the port. "It will feel odd, but there shouldn't be any pain." Now, as her voice from above the blue hood said it was about to happen, it did, indeed feel odd. There might have even been a bit of sound involved, but I could be imagining that part of it. It was painless, but -- as she had predicted -- still an odd sensation.

At some point during this process she told me that I didn't have much fat to work with so the skin would be stretched pretty tight over the access port. As she sewed up the incision, she mentioned the lack of fat again. "You're pretty skinny, which doesn't give us much extra skin to work with." I thought of apologizing for my lack of body fat, but I didn't.

"I'm suturing the incision with a thread that will be dissolved in several days by your body, so you won't have to come in to have the stitches removed. I'm afraid this will leave a scar because there isn't much skin to overlap."

The hood over my head and heavy lead blanket on my torso were removed. I then saw the overhead track system in action as the camera and two large monitors were positioned into a place where I could see the monitors. "Show him the last image we took," the technician said to someone I couldn't see. And there it was: an x-ray image of my chest with the circular metal port showing clearly in the upper chest cavity and the long catheter tube angling upward and then dangling down inside a vein.

That part of the image surprised me. "So the whole tube just dangles in the vein?"
"Yes, we inserted it into the vein up here."
"There's no problem with clotting around the tube?"
"Not really. The nurses in the infusion room might sometimes give you something to prevent clotting inside the catheter, but I've never heard of problems in the vein itself"

I'd later find a tiny incision in my upper chest above the main incision for the port. That's apparently the hole they had used to thread the catheter into the vein.

During the procedure, by the way, I'd often felt the bed I was on swiveling on its pedestal. As they pushed the camera and its monitors out of the way, I realized that the swiveling bed had been used to position me under the x-ray at the ideal angle. The two sets of tracks on the ceiling allowed the camera to be moved from side to side and from front to back. The swivel on the bed added a third direction of movement.

I realized as I looked at this x-ray image on a monitor that the technician had been using these video x-ray images throughout the procedure to guide her through it.

A nurse removed several monitoring ports that had been attached to me at some point. He even took away the disposable blood pressure cuff that had been attached to my arm upstairs in the LSU. I was steadied by two nurses as I was directed back onto my short stretcher, and taken back into the hallway outside the room.

The technician who had performed the operation returned with a small glass of water and two pills. "The oncology nurses don't want me to give you ibuprofen because of your anemia. This is..." and she mentioned the brand name of the pain killer. "It's basically Tylenol and oxycodone." It should work OK to deaden the pain. But make sure to take it for the next few days as soon as you start to feel the pain." Since she was giving me only the two pills, I made a mental note to ask the nurses for more of whatever this was when I got back to the LSU. "My fingers were inside your tissues there" -- she pointed to the large bandage on my chest, "so you could feel considerable pain for a day or two until the tissue heals."

I was then handed off to a transport worker who rolled me toward the deeper north elevator bank this time around. These elevators may be slow and jerky, but they're made for this kind of transit.

I was worried about finding my sisters, but they were already back in the LSU room when my stretcher was wheeled into its position.

To be continued...

Chemo delayed by poor lab results

2006-04-29T16:05:00.000-07:00

[Friday, 9:30 am] This hospital doesn't have wi-fi for patients and visitors, but I decided to bring along my laptop today to store a few posts for later uploading to the blog.

[10:15] Platelets are low. Maybe too low for chemo. We're waiting for Dr. O to respond to a page for her decision on whether to go with it.

[10:25] Dr. O just called. I heard the nurse explain, "Labs look OK, but platelets are low." She ran through the numbers for Dr. O before coming over to explain to me, "We're concerned about your platelet count today. We don't usually like to give chemo when the counts are this low, so we'd like to reschedule for Monday. We'll check the blood work again to see if things have rebounded."

---
And so that was it for yesterday's attempt at semi-live blogging and for yesterday's attempt at the third chemo session.

This isn't good news -- that my blood components have become so erratic, even after Wednesday's transfusion. I'll try to schedule a clinic visit with Dr. O on Tuesday to see if there is anything more I should be doing with diet or anything else to help get things back on track. But it's really starting to sound that the reactions of my blood to all of this are a bit baffling even to the doctors.

Before leaving the infusion room, a nurse explained to me, "We really don't like delaying chemo for too long, but a week is usually OK. On the other hand, we don't want you to bleed out after we give you the chemo."

And somehow, that seemed funny (as I believe it was intended to be). "Yeah," I laughed, "that doesn't sound like a good alternative."

I packed up my laptop and headed down to the clinic to try to take care of some billing issues that have cropped up over the past month. I managed to meet with one of the two financial counselors that I'd hoped to see. I'll have to devote several more hours next week to getting the issues under some sort of control.

While doing that, I worried that I might be setting up a jumble of missed crossed paths with my sisters who had planned to come over to see me in the chemo room in the early afternoon.

After we'd lost one another due to a misunderstanding after walking last Saturday to a local outdoor outfitters store, Sister #3 had lent me one of her cell phones for the past several days so that it would be easier for us to keep in touch. I'd given it back to her Thursday night, thinking it wouldn't really be necessary while I was sitting in the infusion room all day Friday.

Of course, Friday turned out to be the second time that the mobile phone would have been most helpful. I hoped that we wouldn't cross paths as I waited in the clinic to sign papers and to pick up the replacement meds that might help alleviate my anemia. At about 11 am, I headed off toward their hotel, trying to keep an eye out on cross-streets to spot them if they were walking in the opposite direction.

But it all worked out. They were preparing to head off to the hospital when I knocked on their hotel room door.

Sister #4 was packed up and ready to head home. An airport shuttle was scheduled to pick her up at the hotel at 2:30.

That gave us just enough time to enjoy a nice brunch at a neighborhood cafe. We were back to the hotel and had rolled #4's luggage off the elevator just as the airport shuttle pulled into the driveway.

Walking test: Transfusion worked

2006-04-27T20:42:00.000-07:00

Judging from my stamina today, yesterday's blood transfusion did its magic in bringing my blood back to something close to its expected oxygen-carrying capacity. And we sure did test it today.

I figured I'd show my sisters (#3 and #4) a bit of west coastishness by taking them to dim sum in Chinatown. (That is -- for those unfamiliar with it -- a style of brunch common in some Chinese restaurants. One sits at a table and selects small samples of various foods offered on carts moving through the room. As any small platter of food is selected the waitress will mark off a number or symbol on the bill. It's a style of eating similar to "tapas" in a Spanish restaurant.)

Chinatown is downhill (way down) from the hotel where the sisters were staying, so I figured a walk would be OK. And it was -- at least for me -- although I'd started to realize that some of the walks I'd been leading them on had been a challenge for #3 who had some footwear issues during the week.

But we walked down the steep hills. At the appointed restaurant we met a friend (the same one who gave me rides after biopsy surgery) who is more familiar than I am with the various foods offered on the carts. Three of the four of us enjoyed the meal. Sister #3 didn't seem to be enjoying much of anything that the place (or the neighborhood, for that matter) had to offer.

But at least it was an experience. Right? (I hope so, anyway.)

After the dim sum brunch, I figured we'd head back to the hotel, but sister #3 wanted to do a bit of shopping for IPod accessories. And I figured I owed her that much after subjecting her to the dim sum that ~~she clearly hadn't enjoyed~~ I sensed she hadn't enjoyed. So we caught a bus to the U District where there's a dedicated Mac store.

And we did a fair amount of walking there among the stores that the two of them wanted to check out. And at some point in the process, I realized, "Hey, I'd never have tried this on my own, but I'm still feeling pretty good."

So --hurray for the transfusion. Tomorrow, I hope to pick up the new meds from the clinic pharmacy to see if those help to keep the CBC up to close to their current levels.

[Update, Saturday, 4/29] Before she left town, Sister #3 seemed a bit offended when I mentioned this blog post to her. She insisted that she really had enjoyed the visit to the restaurant for dim sum even though she didn't care to try out most of the food that was stacked onto our table. I'm still not sure that even what she did try agreed with her much. But now I know a class of restaurants to avoid if she visits again.

A transfusion instead of an infusion

2006-04-26T20:04:00.000-07:00

Instead of today's regularly scheduled chemo infusion, I had a blood transfusion. My oncologist (we'll call her Dr. O) decided that it would be best to do that and move the chemo to Friday because my "crit" count was way done in the blood draw taken prior to the placement of the central line.

So that was today's five hour-tour in the infusion room.

There's nothing noteworthy about this. It's just a matter of sitting there and waiting while the blood is slowly pumped in through the new portacath. (The skin around that still hurts every bit as much as the technologist who put it in said it would. More on that when I get around to completing the report on its placement.)

I was worn out once again after this transfusion. After getting home, I dropped off to sleep for nearly three hours.

I was briefly interrupted by a phone call from my regular doctor (aka primary care physician or Dr. R for the purposes of references here). She and Dr. O had discussed the anemia after I visited each of them yesterday with my sisters. The docs decided that one of the non-cancer-related medications I've been taking might be contributing to the anemia. They've decided to switch me to a different medication to see if that helps with the anemia.

With my sisters in town, I haven't had much time to contribute to this blog's history, but it's better for them to get the info directly, after all. Things will get back to the usual wordiness after the weekend.

Getting an IV port in my chest

2006-04-25T13:31:00.000-07:00

I now have a dedicated IV port sitting just below the skin on my right chest. It's an odd little thing with a round metal access device about 3/4 inch in diameter and about 1/4 inch thick (this PDF page is the best explanation and diagram that I can find). The metal device is filled with a viscous plastic material of some sort into which an IV needle can be inserted. A thin eight-inch plastic tube was threaded into a hole in a vein and then allowed to dangle inside the vein. That tube will deliver chemo drugs into the vein.

Because the access port is under the skin, there will still be a needle poke, but because the target is so much larger than a vein in the arm, it's a simpler procedure and less given to misses.

It was inserted using local anesthesia (mostly delivered via a large number of injections) yesterday starting at around noon yesterday.

Despite the local anesthesia, I was required to do the typical pre-op fast that I'd become familiar with from my two visits for the initial biopsy. The nurse who explained it to me over the phone said that the fast was required "so that we have the option to give you more elaborate anesthesia if you're feeling too much pain during the procedure."

OK, then. (That did add a bit to my nervousness about it all Sunday night.)

To prepare for the fast prior to the midnight start, my two sisters and I went out on Sunday evening for a passable Chinese meal at a nearby cafe -- it's not one of the places I'd recommend to visitors as a true taste of that cuisine here, but it's close and cheap and quick -- so why not.

They both came by my place Monday morning and we headed off to the hospital for the 11 am appointment at what's called the "Limited Stay Unit" or LSU. Even before the nurse explained, I realized that the gown, pants and terry-cloth booties lying on the bed were meant to replace all of my clothes which would be transferred into the big orange logo-bag.

That done, I climbed onto the bed. But a strange bed it was. It's only about 5 feet long and I'm 6 feet long, so my feet had to dangle over the bottom. As the three of us ("us" being siblings 3 through 5) laughed about this odd arrangement, a flurry of unrelated activity erupted in the otherwise unoccupied room. The nurse came in the wrap the arm I offered her -- "Left arm. Please." -- in warm blankets to encourage veins to reveal themselves. Then two guys who could have been sent by an unimaginative casting director for their roles showed up in the room. There was a tall, thin, nervous and apparently harried fellow who would have been scripted as 'IT guy #1' and a strong barrel chested fellow carrying a tool chest playing the role of 'Carpenter #1'. IT guy explained what had to be done and then scurried off. Carpenter used an electric screw gun to remove something from the wall. He said to my sisters or to no one in particular. "He'll change his mind by the time he gets back, so I think I'll wait."

The nurse came back; selected a likely vein; and skillfully inserted IV catheters. She did it well, but it's a procedure I've never been able to watch. I did watch her tape down the IV tubes to my arm and insert a blood sample vial. Just as the blood began to pour into the vial, we got a very odd sound effect: the loud whooosh of a power drill. "Jeez," I said. "I'm glad that sound effect didn't come 30 seconds sooner." Somehow, it wasn't a sound I wanted to hear as a plastic needle was being inserted into my arm.

The friendly carpenter, it turned out, was installing new wall-mounted computer CPU units for the IT guy who was also a friendly fellow when he stopped for a moment.

At about 12:30, a woman in scrubs showed up. "I'm from [hospital] Transport. I'll take you down to the procedure room." For some reason, she decided to use the newer central elevators even though they're smaller than the old east elevators that are made for the mobile beds. She said she wasn't sure if we would fit, but decided to try.

To be continued...

Meta post: Finding a realm of "cancer bloggers"

2006-04-23T09:07:00.000-07:00

I want to thank Carl Wilton who managed to find this blog through the only odd sort of misdirection that will point to it right now in that big, big search engine. He looked because he is himself keeping a blog about his own experiences with lymphoma. He was kind enough to tell us about his blog in a comment to my previous post. I learned from the links that he's collected that he and I are not alone in doing this kind of thing.

Carl is a minister. His posts, like his experience, are heavily influenced by his faith. I don't share it, but the ex-philosophy major in me still finds those parts of his blog fascinating. They at least help to remind me that a vast number of those who call themselves Christians practice and follow a religion that is far more compassionate, tolerant, and generally admirable than the fringe brands of the faith that generate for themselves far more publicity these days than they deserve.

Carl is also far more interested and involved in the wider world of lymphoma care and research.

It's fascinating. I expect that I'll be returning to his posts when I'm ready to embrace more information, but I still find myself not yet fully ready to delve into all of his posts about cancer. Similarly, I found myself turning away from a page on adverse reactions to chemo by blogger and pianist Dave Hahn who has now survived lymphoma and its treatment. I guess I figure that I don't need to read it just yet since I haven't (yet) had the nasty reactions that some have had to chemo (if we discount the two weeks of diarrhea and the profound fatigue -- which is discounting a lot).

I'll get to my own, admittedly odd reactions to info overload in one of my continuing backhistory posts. (I'm guessing that will be post 6 or 7 in that long rambling series.) But Carl has collected links to several blogs similar in subject to, but also vastly different than this one. Each recounts personal stories about cancer. (Look for the links at the bottom of the links section on the right side of his pages.) It's interesting to know that there are other folks using this still-new medium to chronicle out their own idiosyncratic experiences and reactions to this disease.

He even found something that claims to be a research project on cancer blogs. I won't link to it here because the survey seems at least unprofessional if not slightly shady since it isn't backed by the kind of background information one would expect from a well-planned research project.

Most of us probably do this (as I do) first of all for family and friends who are the only ones likely to care about or really understand much of what any of us might say. But we also throw our reflections out to the web at large, thinking that maybe someone at some point will find something of use in our personal, idiosyncratic, and non-expert recountings. Some might wish to inspire or teach. Some of us may seek to amuse along the way. But it's all so much different than the vast stream of (mostly) gunk that marketers are throwing out onto the web for those who search for any likely term about these conditions and treatments. And it's good because it's different, because it's personal.

I'm not a group-hug or support-group kinda guy. I haven't been tempted to seek out one of those groups or even a web discussion forum version thereof. But I'm oddly heartened to see on the simple stats report that I get for this blog that my sisters are reading -- that I'm able to communicate with them in ways I've neglected for all too long. Writing this becomes something like a support group, but -- ya' know -- without all that group and hugging stuff.

As I mentioned a while ago, I was also heartened when sister #2 sent along a note from her friend "H" who is suffering far more than I am from this disease and even more-so when she sent this note the other day:

I just wanted to let you know that your words inspired "H" to capture some of his thoughts for his wife, "B". Your words have a power that even the seven of us did not realize!

I've told you about my friend, "L". I honestly believe, she anticipates your journal entries every bit as much as I do. As "L" read your entries and thought of you and of "H", she couldn't help but think it would be wonderful if "H" captured his thoughts, as well. When she told this to "B", she broke down thinking about "H"'s ability to tell a story.

Your journey allowed "B" to let "H" know how much his written word means to her. You allowed "H" to give "B" a lifetime gift.

So, I guess -- even though I say more than "house, bridge, fountain, gate, jug, fruit-tree, window" # -- that the saying may have at least some temporary value.

Discovered a new symptom

2006-04-22T16:47:00.000-07:00

I guess I found out an hour or two ago what happens if I ignore or overlook the urge to sleep and rest. Sisters #3 and #4 are now in town. 4 arrived yesterday in the early evening. We had a nice dinner. 3 didn't arrive here until after midnight our time. I'd come back to my apartment by then.

This morning, I walked over to their hotel which is only five blocks from my apartment. 4 brought along a wonderful collection of historical photos and letters of Mother's family and of Marysville, the small Montana town that is that family's common home. We sat and looked through those. (I'll scan them and post most of them someplace.)

To give the maid time to attend to the room, we took a slow and pleasant walk through the flowerful campus of the small university across the street from the hotel. Beautiful place -- especially at this time of year when the rhododendrons are beginning to display their profusions of blossoms.

There was only one short hill along the route. It didn't seem to call for a stop and rest break, so we moved on as I showed them the short route from their hotel to the hospital. We then headed back in a direction to where they might be able to get a chai tea or something similar, stopping at a drug store on the way.

I didn't feel tired at any point in this jaunt. But something came upon me just after entering the drug store. My teeth began to hurt. My head was aching in ways that I don't normally associate with a headache, but I recognized it as a particularly acute version of one of those. I sat in the lobby of the medical building that holds the drug store. I began to feel that I might even become nauseous.

I'm not sure where it all came from. The drug store is only two blocks from my apartment, so they brought me back here. I laid down as soon as I entered my place, fell asleep without taking a pill of any sort. I awoke about 90 minutes later and everything was OK.

I don't know. I guess I need to heed the fatigue when it calls.

Another week of sleep; Plus a visit from two sisters

2006-04-20T22:06:00.000-07:00

Speaking of sleeping away a week... This has been another of those weeks. It's odd, though. I don't feel the great weakness and the heart-pounding when I walk up a slight hill -- only slight weakness and heart-pounding. But I've sure been sleeping a lot. Even the too-wordy posts that I've been putting up for the past few days have prompted one- or two-hour naps.

Based on the limited experience of only two courses of chemo, I'm beginning to detect an odd pattern: I've felt best in the first week after chemo and then felt progressively less well in the next two weeks.

But there will be another course on Wednesday, so we'll get to see if that slight pattern repeats itself. In fact, next week is a busy week with several medical appointments already scheduled and two of my sisters (#3 and #4) coming to town for the week. #3 is visiting from the east coast. #4 is coming from the upper midwest.

I had hoped to clean up my apartment before they got here. I've never been a good housekeeper, but I've gotten even worse in the past few months. I'm afraid they'll want to spend their time cleaning and I really don't want them to have to do that. I just talked to #4's son who suggested that maybe I should buy some yellow caution tape and stick it over the door. I figure maybe I can tell them that the health department had determined that the place is safe only for its primary occupant.

We'll see...

Next week's medical visits begin with an appointment Monday morning for out-patient surgery (thankfully using only local anesthesia) to install a "central line" for IVs into my chest cavity. I then have two visits back-to-back on Tuesday at the clinic. The first is with my primary care provider. The next is with the oncologist. I scheduled those mostly for my sisters to be able to meet the doctors and to ask any questions that I haven't been able or willing to answer. And Wednesday is the infusion day.

Now, however, I think I'll eat something and then go to sleep.

History #4: Waiting for biopsy results

2006-04-20T14:58:00.000-07:00

This back-history recounts some of what I remember of this already-strange course before I started this journal.
History #1: Noticing the symptoms, getting tests
History #2: Waiting for a biopsy
History #3: Getting the biopsy

My next appointment at the hospital was on Tuesday, March 7, a week after the biopsy surgery. Although I figured I might get a call about the results earlier than that, I didn't expect it. I wasn't sure what kind of timing was involved in these things, but I didn't expect a quick result.

I didn't get a call. And so a week of waiting with much sleeping began.

One thing I did not do during my occasional bouts of wakefulness in this week of waiting was look at any of the many pages on the web about lymphoma (like those presented in the "Links" section on the lower left side of this page). I knew how to find them. I thought about looking. But for some reason -- or perhaps unreason -- that I can't explain, I didn't yet want to know. I wasn't ready to delve into that kind of research.

Memory is a bit tricky about things like this, but I believe I knew even then that these symptoms were probably being caused by a cancer, by lymphoma. But I wouldn't know for sure until the results of that biopsy came back. And I wasn't yet ready to deal with any additional information after this already busy month.

My primary care physician (PCP) at the clinic had told me at the beginning of the long month of February that the enlarged node might be caused by lymphoma, but she'd also told me that a number of other things could cause it. She had asked me a number of questions about cats. Had I been scratched by one? (And I recall a sense of relief that, although the name of the head-banger song had creeped into my mind at the moment, I wasn't able to recall anything else about Ted Nugent's "Cat Scratch Fever") Had I handled a cat?

No. No. To all cat questions. A neighbor a couple of apartments down from me has two cats. They sometimes even play in the hallway, but they're skittish creatures who run back into their apartment if they hear any activity in the hallway. I'll occasionally see one of their toys in the alcove outside my door. I'll gently kick the toy toward the cats' door, but I've never picked up one of them.

So it wasn't cat scratch fever causing this enlargement, but even ruling out that possible cause, I still believed my PCP when she told me that there could be explanations other than cancer for the swelling. I believed her, even though I suspect that both she and I strongly suspected that this would turn out to be lymphoma.

Allow me to sidetrack for a moment to give you, dear readers, at least a notion of the kinds of information that was rattling around in my "caverns where thought and feeling dance their sabboth" while I awaited my biopsy results.

I'd long known the term "lymphadenopathy". I knew it as a general term covering any kind of enlargement of the lymph nodes. I knew the term because in the early 80's, I had been editor and principle news writer for two different gay newspapers in town. That was the era when a strange but deadly collection of previously unrelated infectious diseases had begun to affect uncommonly large groups of gay men, mostly in New York, San Francisco, and Los Angeles. I wrote the first story using the term "AIDS" in one of those papers. It was a story about the announcement that this new acronym would now be used to refer to this still baffling syndrome.

I knew the term lymphadenopathy in this context because in those early days of AIDS research when the situation was being studiously avoided in Reagan administration talking points, some researchers were nonetheless looking into it. I knew the term because I'd printed press releases, ads, and even a story about a local researcher who had begun a wide-ranging study of otherwise unexplained lymphadenopathy. He sought out a large group of folks with lymphadenopathy to see if they were more or less likely to eventually develop one of the diseases being called AIDS.

One of the paper's writers -- James Moore -- had even given me a wonderful article about becoming a part of the lymphadenopathy study, and about his concern about where it might be leading. (At James's request, I printed that story and a later, related story anonymously. I've since come to regret that decision somewhat because I've seen his articles quoted without giving James, who died of AIDS shortly thereafter, the posthumous credit he deserves. [James is quoted in that link in the third paragraph under the heading "Acting up against AIDS".] And that probably has something to do with my recent decision to forgo the previous anonymity and put my own name on this blog.)

I eventually came to know back then that a researcher at the National Institutes of Health had identified an odd kind of virus called a "retrovirus" that was considered to be a root cause of some previously unexplained lymphadenopathies. (The researcher, Robert Gallo, named the virus HTLV -- eventually HTLV I and HTLV II -- for Human T-cell Lymphadenopathy Virus. Gallo later tried to pass off a similar but unrelated virus as HTLV III. That's the virus now called HIV that is the root cause of AIDS. It had actually been isolated not by Gallo, but by a French researcher, Luc Montagnier.)

The lymphadenopathy study became mostly superfluous after HIV and blood tests to detect it had been identified because the HIV blood test can either rule that in or out as a cause.

So with all that as background, I was prepared to carry at least an illusion that my lymphadenopathy might be caused by something other than cancer. But -- and, again, memory is especially tricky in this kind of thing -- I believe I carried a strong suspicion that this would turn out to be lymphoma.

The one thing I had been instructed to do during that week was remove on Wednesday the bandage pack that covered most of my right armpit. In a moment of wakefulness, I tried picking away the tape that held it in place. But it was still too sticky and I couldn't bring myself to make a quick tear of it since I didn't know if the gauze had become stuck to the incision. It was Friday before I finally drew a bath so that I could pick off the bandage. I was surprised to see a 2.5 inch incision. But then, I figured they had to have been doing something during those four hours that I was out.

And so, I waited and I slept and I picked at the bandage, but without adding any new information from the web to my stores of mental data about these subjects.

History #3: Successful biopsy surgery

2006-04-19T12:41:00.000-07:00

This back-history recounts some of what I remember of this already-strange course before I started this journal.
History #1: Noticing the symptoms, getting tests
History #2: Waiting for a biopsy

So when the surgery was rescheduled, I returned home and began two more days of waiting. It wasn't that hard to do because by then, I was sleeping 12 to 14 hours a day. It wasn't that I felt weak (as I often do now with the anemia or near-anemia), but I was just profoundly tired.

By then, I'd also noticed more enlarged nodes. There were still several small lumps on the back of my neck. The string of bumps under my left chin had continued to grow. The tender area on my left leg in the groin area was by now a distinct lump. The node in my left armpit was almost as large as the one under the right arm. Although I doubted that it was related, I was also starting to feel an ache in my lower back. I assumed it was just from sleeping or sitting too much.

I tried to avoid too many mid-day naps on Sunday so that I might be able to sleep better during the fasting time on Monday morning. On Sunday evening, I was careful to have a good meal. And I did manage to sleep well on Sunday night/Monday morning.

I awoke easily with the alarm, showered and headed off again to the surgery waiting room. I was there at the appointed 8 am time, checked in the desk guy who was in his cubicle for a moment at this visit. I took a seat in a corner. It was Monday, February 27.

This time around, the waiting room was packed with people. The low buzz of many conversations created a white noise that masked any individual conversation. I thumbed through a magazine.

It was a little before 9 am when the desk guy called my name and the name of another man. We followed him into the pre-op room. He handed me a hospital gown (which, mercifully, included light cotton pants), pointed me to a changing room and took the other guy off to a different room.

I changed; stuffed my clothes in a big bright-orange hospital-logo bag; and reported to the nurses' station. It was a different crew working there today, but the procedures were the same. I took a seat in the appointed comfortable blue easy chair, offered my left arm (always the left, I explained to the nurse) for the IV. She started the fluid drip and then quickly ran through the fasting checklist. I was tempted to say "I didn't even have a half-a-beer, or even three-and-a-half." But I realized the comment would not come across as witty since this nurse knew nothing of my curtain-neighbor's problems on Friday. I just answered her questions and answered the same slightly-longer checklist question when the anesthesia nurse showed up several minutes later.

The "IV nurse" returned. As the nurse had on Friday, this one checked her chart, asked me to point the the "affected area" and then marked with an orange marker the enlarged node that was to be removed for the biopsy. I could feel that she drew an "X" on my chest below the armpit and then drew a large circle around the node. She again explained that this was done to assure that the cuts would be done in the correct area.

And the fluids dripped into my vein.

At a little after 10 am, I was wheeled in my easy chair to a far corner of the large room (which, I recognized, was in about the center of the new west hospital wing); repositioned onto a gurney; and given a wrapping of warm blankets while the fluids still dripped. After several minutes a new nurse who I hadn't seen before came by; introduced herself; checked the IV and the fluid bag; and explained that she'd be with me throughout the surgery and would "be here when you wake up".

She checked my arm for the orange marks, and then said she'd wheel me into the surgical suite.

And then we started rolling... and rolling. It was a very wide hallway with gurneys and a wide array of medical equipment stacked against each wall. We passed at least a dozen double doors that I assumed were entrances to operating rooms. And we kept on rolling to the end of the hallway and then turned to the left into another equally wide hallway, again filled with equipment against the wals. I recognized that we were now under the older east wing of the hospital, but was a bit surprised by the block-and-a-half length of that single hallway. The nurse pushed me through the second or third double-doorway after turning the corner, which put us at the front of the east hospital wing. Quite a ride.

When she had positioned my gurney in the center of the room, I told her, "This is the brightest room I've ever seen."
"We like them to be able to see what they're doing."
"I gotta say... I'm happy to hear that."

The ceiling on each of the four sides of the room was lined with rows of double fluorescent bulbs. At the edges of the ceiling, each double-row of lights was about a foot apart from the next. In the center of the room, directly above me, was an eight-foot square box of lights about two feet higher than the surrounding ceiling. The top and angled sides of the indented box were filled with fluorescent lights installed without spaces between the rows. A movable spotlight apparatus hung from the center of the light box. I believe there were even some rows of fluorescent lights spaced along the walls, but I'm not sure.

I didn't have all that much time to study it before a woman in surgical scrubs came in and introduced herself as the anesthesiologist. She explained that they'd be "putting a drug into the IV that will put you to sleep. We'll put a breathing tube into your throat. It will be out by the time you wake up."

After a few more preliminary explanations, she hung another small bag on the IV pole beside me, and (I believe) shot a syringe of something into an unused IV receptacle. "This will put you to sleep," she said.

And then, instantly, I was back in that corner of the pre-op room from which I'd begun my long gurney ride. At least, it seemed like it had been just an instant as I became aware again of my changed surroundings. The nurse who said she'd be there with me was there. She said something that I don't recall.

But then, I began to notice a few changes. I felt a roughness in my throat. Not really a sore throat, but my voice sounded hoarse as I responded to the nurse. I felt a slight throbbing pain in my left armpit, and then noticed that the arm was in a sling. The nurse gave me two pills with a small sip of water when I reported the symptoms.

And then I noticed the wall clock: almost 2:30. Whoa. Four hours? I was astounded by that even though I was still a bit groggy. Four hours? I thought then that maybe it would have been good if I'd allowed the friend who had offered to wait for me to do so. "Ah, no. No need for that," I had told him. "I'll just call you when I'm ready to go." But if he'd been waiting, maybe someone would have explained why this simple surgery had taken four hours.

I might have asked the nurse about it, but I don't remember what she said.

After verifying that I was reasonably aware of my surroundings, the nurse who had wheeled me into the OR took her leave.

The nurse who had given me the IV hours ago repositioned me from the gurney onto a blue easy chair; wheeled me to a curtain area; and offered me crackers and a juice. "Cranberry juice, please." (I think the IV had been removed while I was out, but I'm not sure of that.)

After I'd enjoyed my slight snack, the nurse offered me a phone to call my ride. "You'll be ready to go in about a half-hour." I believe I told my friend that it would be 45 minutes. (For reasons I'll get to in a moment.)

Several minutes later a nurse delivered the orange bag of my clothes, closed the curtain, and told me I could change. I had a bit of trouble repositioning the sling over my clothes, but managed it without assistance.

A nurse then repositioned me onto a wheel chair. "I don't really need that," I told him. "Regulations. You do need it." He wheeled me into the elevator and up to the waiting area in the hospital's large front lobby. He left me there, so I climbed out of the wheel chair, pushed it away, and settled into one of the regular lobby chairs.

Having successfully made that transfer, I checked around to make sure that no one was watching me, and then walked outside to the view park. It was drizzling a bit. I retrieved a cigarette from my jacket pocket; reluctantly gave another one to a guy who'd been watching for this opportunity; found my lighter; and lit both cigarettes. [Notice the comment link below if you'd like to scold with something like, "You've just had a biopsy for cancer and you're smoking a cigarette?" Yes.]

First one in over 15 hours because smoke is included among the fasting items, along the less important stuff like food, water, aspirin, and -- yes -- beer.

Because of the drizzle, I leaned against a wall in a covered portion of the park. The guy who'd bummed the cig from me sat with a couple of other folks on a bench opposite me. After the second puff, I realized that leaning against a wall wasn't such a good idea. I thought of just sitting down on the concrete below me, but instead wobbled over to the nearly full bench. "Sorry, but could I get a seat?"

The guy who'd bummed the cig pushed over to give me a spot. "Are you alright?" he asked with a look of genuine concern. "Oh, yeah. Fine. Just haven't had one in over 14 hours." I gestured with my cigarette. "Gave me more of a buzz than I expected." A couple of the others on the bench left it. "Are you sure you're OK?" "Yeah. Really. I'll just sit here for a minute." The concerned stranger left.

I think I finished about half of the cigarette before stumbling across the street and back into the lobby.

Just after I sat down, my friend appeared in the doorway. He'd seen me me crossing the street, but I hadn't noticed him because he was in an unfamiliar car. He opened the passenger door for me and we drove the few blocks to my apartment building.

"I can make from here," I told him when he pulled into a parking spot that wasn't the loading zone.

"I'm not sure you can. I'm coming with you."

Inside my apartment, he told me to sit, and asked if I had juice.
"I can get it."
"No, you can't. Sit down," he said sternly as I instructed him where to find the quart of orange juice that I'd mixed the night before.

Handing me a glass of juice, he explained, "Your face is completely white. No color in it at all. You don't look good."

I guess that explained the concerned look of the stranger on the bench.

After making sure I drank the entire glass of juice, my friend refilled it and got me some crackers from a cupboard. After drinking some of the second glass, he asked if I was feeling better.

"I'm a little tired, but yes."

He left. I moved myself to the bed. I fell asleep. And for most of the next 48 hours, I slept. I awoke only occasionally to pee, drink some of the juice, and maybe eat something simple like a canister of yogurt.

So, at least the first part of a week of waiting for the results of the biopsy went smoothly.

Christmas in April

2006-04-18T18:35:00.000-07:00

Sister #6 (according to the naming convention I decided on) [aka MO6], sent two fairly large packages today brimming with stuff. So much stuff. Pants. Underwear. Cleaning supplies. I tried to talk her out of it when she first mentioned it to me, but (and I love her for this, but I sometimes I feel bad that she gives so many gifts), it didn't work. She's a great gift giver, and she even shares her skill at that with the public in a wonderfully packed Irish/Celtic gift store she runs in Butte, Montana.

If anyone who happens upon this blog is anywhere near Butte, take a trip into "Historic Uptown" and stop in at Cavanaugh's County Celtic and Beyond, just off the corner of Montana and Park. It's worth a short trek off of either I-90 or I-15 to visit the place.

Most of the stuff she sent to me, she picked up elsewhere, however. It is too much. But... [sigh]

One thing that did come from her shop, however, is a pair of Sport Kilt "Noggin Wraps". So that's my new stylish option to cover my too-white bald pate.

Meta post: About this blog

2006-04-17T15:52:00.000-07:00

I hope I'm not tempted to do this too often (and please scold me if I do), but this is one of those dreadful blog posts that is only about the blog itself. You, dear reader, might want to ignore this one because it's too much the self-indulgent ramblings of an ex-philosophy major non-graduate.

I should just let the blog speak for itself and find its own voice and rhythm, but for some odd reason I feel compelled to shape it with this too-complex description.

I wasn't sure where this thing would go when I started it off, so I left it anonymous and unplaced. I've now changed that. If you check the profile to the right, you'll notice that my name is now displayed. And I've identified this town I've been talking about: Seattle. Knowing that, anyone who happened upon this blog could also figure out the name of the hospital I've been talking about. Yes. It's Harborview. But I think I'll probably just keep on calling it "the hospital" for now, even though I pass by two other large hospitals on my eight-block walks to Harborview.

Nerd notes #1: In case the search engines do start to index the blog, I've started to add a series of "tags" to the bottom of each post. Because this free software from Blogger doesn't allow me to easily create my own indexes to posts, I'm sending those links go off to Technorati for now. Unfortunately, they're not yet picking up posts from this blog, so my posts won't show up in the list that is shown. Instead you'll see mostly posts from some official med-info sources, and a distressingly large number of spammy posts from commercial endeavors using those tags, but mostly hoping you'll click on their text ads. Update [4/18]: I've decided to remove those tag lists for now. They were returning pure junk. I might reconsider them later.

Even though I've now revealed my own name, I'm not going to refer to any of my five sisters by name, but I think that I will adopt this convention: I'll refer to them by rank, according to age. It seems only fair that the youngest among us should get the lowest number since hers is the youngest age. She'll be "Sibling #1", or maybe "sister #1". I'm "Sibling #5" and my older sister will be "#6". We are, by the way scattered across the country. No two of us even live in contiguous states.

Right now, the only folks reading this are my sisters, a few of their friends that they've decided to share it with, and a few of my friends. And I suspect that's the way it will stay for as long as I keep posting. But I decided from the start to set this up as a public blog. That means that anybody can read it. In a few months, the posts might even begin to show up on one or another of the search engines.

Sister #2 sent a wonderful email this morning that I'll share more fully in a later post (because I think we should all be able to share it). In it, she said something very much like what sister #1 said to me in an email a few days ago:

I love reading your journal. I think about you all day long and find myself checking your blog several times a day to see if you may have written a new entry. ...

I've almost sent a link to your journal to several of my friends, almost but, no. I realized I've yet to share it with other friends because, as I anticipate and read each entry, I feel as though you are writing directly to me, and I just don't want to hit the conference call button. Not yet. I like that this is personal.

And it is.

Even though I've made the posts public, I hope that that these blog entries will continue to be personal. I do write them for the two of you, #1 and #2, and for each of the five of you and for Daddy and "J".

It is personal. It's for the eight of us. But it's also selfish -- as the high concentration of "I" pronouns suggests. I suppose that's why I make these private reflections public even though I recognize that they really should belong just to the eight of us. It's ego. Mea culpa. It's what prompted me put my by-line on way too many of the things I wrote years ago in a small community paper for which I was both principle reporter and editor.

I haven't been responding well to any of your emails, but please realize that I greatly appreciate each one. I've often responded here in this too public of ways to things you've said to me in private emails or conversations.

I hope I don't go too far with that kind of publicity for the private in any post. If I do, please scold me and I'll fix the post as soon as possible. (I'll do that even though it is never possible to completely change these things once posted -- despite my all-too-frequent edits to correct dumb-bell spelling and wording errors.)

Sister #2 did share the link to this journal with her friends "G" and "H". "H", she explained, has been through chemo, but now "they are patient as cancer cells ravage H's body."

She shared this note from H:

Thanks for sharing your brother's blog with us. It made for touching reading. It is eye-opening how one's perspective on certain things (like what is a "good" day) changes with a situation like his. I wish him all the best. I also offer good wishes and high hopes for you and others of his family and friends. (I'd offer prayers instead of just good wishes, but I'm not conventionally religious.)

I also (as you might have guessed) am "not conventionally religious" -- a romantic Rilke poem here and there is about as close as I get. But I appreciate your words and thoughts, H, in ways I couldn't possibly have imagined two months ago when I was wondering about that bump in my right armpit. I also appreciate in new ways hearing that #3's SO (who, I'm told, is conventionally religious) had an entire congregation in an east-coast town I've never been close to utter my name in prayer at an Easter Sunday service.

And I guess that, too, is part of why I make these private reflections and experiences public in this odd way. It's not that I expect or even want sympathy or pity. I'm afraid I wouldn't know how to respond well to either of those emotions. But somehow I now want to shape "the unsayable" -- feelings and memories -- into words that might, ever so inadequately, become shared objects among us.

I guess, in a way, I'm both ignoring and responding to Rilke's rhetorical question from Rilke's Ninth Elegy that's been rattling around in my "brain and heart and other caverns where thought and feeling dance their sabbath". [that is Samuel Beckett]

Are we here, perhaps, for saying: house,
bridge, fountain, gate, jug, fruit-tree, window --
at most: column, tower......But for saying, realise,
oh, for a saying such as the things themselves would never
have profoundly said. [Rilke]

I can say "good day", but I can't comprehend what H means or what my mother might have meant forty-plus years ago when either of them said it. But somehow, by saying it -- by turning it into that thing of a phrase -- each of us in our private ways -- in our own "caverns where thought and feeling dance their Sabbath" -- can, perhaps, come closer to sharing something that's at least momentarily real and jointly owned.

I can't quite follow Rilke's exhortation to

Praise the world to the Angel, not the unsayable: you
can't impress him with glories of feeling: in the universe,
where he feels more deeply, you are a novice.

I think I know what Rilke meant and what his sometime benefactor Ludwig Wittgenstein meant when he said remarkably similar things in such a distinctly different way. But still, I want to say the unsayable. I don't yet want "that which cannot be said [to] remain unspoken."

So, I guess I will say things -- coffee, fluffy clouds, harbor. But I can't resist -- at least not yet -- trying occasionally to say the unsayable.

I can't just say the things because even saying mostly unchanging geologic "things" like "Mount Helena", "Buttercup", "Red Mountain", "Big Butte" is saying something more and less for each of us who "know" those place/things in unique ways. Even those simple names mean something different to each of us siblings who know those land formations in distinctly different ways.

Rilke himself seems to have reluctantly recognized that -- "More than ever / the things of experience are falling away, since / what ousts and replaces them is an act with no image.". As I understand it (in a woefully inadequate way), so did the later Wittgenstein. And Beckett certainly recognized it profoundly:

But now he knows these hills, that is to say he knows them better, and if ever again he sees them from afar it will be I think with other eyes, and not only that but the within, all that inner space one never sees, the brain and heart and other caverns where thought and feeling dance their sabbath, all this too quite differently disposed.

I still plan for this to be mostly a journal about my experience with lymphoma and chemo-therapy, but it's already clear that more extended memoir-like moments and fugues will intrude upon the more mundane reports of treatments and energy levels. But despite those memoir fugues, I also plan to continue to fill in the back-history leading up to my diagnosis and the decisions about the first treatment. It's clear, however, from those first two installments, that even the back-history probably won't be the kind of simple report that it could be.

That means that these posts will probably continue to jump around in the same kind of chronological disorder that's been displayed so far.

And now back to our regularly scheduled program...

Today's labs -- and a reward

2006-04-17T11:30:00.000-07:00

[10:00 am] Another blood draw today. They even took a second sample to use for "typing and crossing" in case a transfusion was called for. But I assured the nurses it wouldn't be necessary. After what felt like a low point yesterday, I could feel more energy this morning as I began my walk over to the hospital. My guess right now as I wait in the view park outside the hospital for the results is that my red-cell count (at least) has spiked a bit.

[10:20 am] And I was right. It's just a bit higher. The hematocrit count is 25 today compared with (if I remember correctly) 24 on Friday. (Those numbers, of course, are valid only for comparisons with samples analyzed by the same lab and wouldn't necessarily be comparable to numbers returned by a different lab even on the same sample. [I read that somewhere and figured I'd pass it on as a kind of public service to this blog's non-public.])

Platelets are still dropping -- 32 today, down from 34 on Friday. But I haven't had any bleeding problems, so they're satisfied with things as they stand. I won't need a transfusion this week.

Not only that, but I won't have to go back to the hospital until next Monday. A week! I think this will be the first time in months that I haven't been scheduled for at least two or three visits in a week.

[11:10 am] I felt like celebrating as I walked home from the hospital. But what? I didn't feel confident enough to buy a breakfast at a cafe, but I did think of yesterday's cup of mediocre coffee. "Wouldn't it be great to have a really good cup of coffee this morning?" Yes, I decided.

I found myself turning a corner to one of my neighborhood's many coffee shops. I've avoided the place for over a year because I'm broke and dependent on the kindness of family members. I shouldn't and really can't afford this kind of indulgence. But I indulged nonetheless. I bought a pound of really good coffee. I selected a temporary specialty blend that combines beans from Yemen (I'm guessing that they are the small peaberry-like beans in the mix) with beans from the Pacific island of Timor (The larger, fuller beans, I'd guess).

But this is a great cup of coffee. I wouldn't be tempted to put chocolate or cream to mask the changing flavor notes of this bold, black and finely balanced liquid.

Ahh!

Ahh! Coffee. A live-blog interlude and hair report.

2006-04-16T14:55:00.000-07:00

I'll take a moment away from the histories and memories for a bit of live-blogging-as-it-happens.

Nothing exciting, let me assure you, but still, it seems like a big deal to me at this moment. You see, I have a cup of steaming coffee next to my as I sit in this chair. When I take a sip in just a moment, it will be the first time in more than a month that I've tasted that wonderful liquid. Ahh, yes.

This isn't especially good coffee. In fact, it's mediocre coffee, but I'm broke these days and had to give up my gourmet coffee-snob habit in favor of something more reasonably priced. Especially today because the beans have been setting unused in an airtight canister for a month, it tastes more like a cup of greasy-spoon diner coffee than a truly tasty cup.

But still, it's coffee.

I mentioned before that my G-I tract had been "cranky" for several weeks. That's what forced me to give up my usual morning cup-o'-joe, along with the cleaning, boiling, grinding, steeping ritual that goes with it. One of the reasons that last Tuesday seems like such a good day is that the diarrhea that had plagued me for a month seemed to finally be falling away. I'll get into all that a bit more later on of my continuing back-history posts. For now, let me just say that things became uncomfortable and downright embarrassing for me from the second week after my first chemo session until last week.

Ahh, but this cup of coffee -- even this mediocre cup -- is a symbol that my digestive tract is back to something close to normal. Mmmmm. Mmmmm. I'm about to pour a second cup, and still, I'm sitting in my chair. I haven't been forced to run to the bathroom. That's a good thing.

(To alleviate the diuretic effect of the coffee and aware of the severe dehydration I suffered when the diarrhea started, I'm also taking two sips of juice for every sip of coffee.)

So this minor coffee buzz I'm feeling right now as I sip on a second cup (this one with some hot-chocolate mix added to mask the unbalanced taste of the semi-cheap Millstone grocery-store beans) along with a glass of water this time -- all of that makes this another good day.

I'm not much of a sun-bunny, but I suppose the sunny day today after yesterday's thick clouds and frequent rain showers is helping a bit. This morning, I even sat in a nearby pocket-park for twenty minutes or so with my hat off to introduce my bone-white mostly-hairless skull to the sun's rays. That was good even though I was sitting down in the park out of necessity as much as choice. I'd gone downhill to a neighborhood corner store (aka, "Korean store" in this town since virtually all of the independent corner groceries in this town are run by Korean families) to pick up something I'd run out of. But going downhill requires traveling uphill on the way back. And walking uphill reveals the extent of my anemia almost as well as a CBC test. My guess after this morning's walk is that the red-cell count is not rebounding very much after Friday's "nadir day."

Oh well, we'll find out officially with tomorrow's CBC test.

But the small park, and its bench, and letting my too-white pate soak in some rays felt good. (Even, though, admittedly, I mostly averted my face whenever someone walked by because I couldn't help but feel that I must look clown-like without something covering my head.)

And my head is, by the way, almost completely hairless since Tuesday's wind-driven shedding and a few more passes of a razor and an electric shaver. Almost. There remains a colony of hair strands at the back of my skull that remain impervious to razor and shaver and that mostly make the clown-cap look even sillier. Despite all attempts to get rid of the strand-colonies at the back of my head, those few isolated tufts of quarter-inch locks remain. What's odd is that these persistent strands are in the area that is usually the first to go for those given to male-pattern baldness. I guess the chemo is giving me anti-male-pattern baldness. (Hey, bois, no snickers from the peanut gallery, eh?)

Ahh. But I pass the electric shaver over those persistent strands once again -- without effect; take another sip of water and a last sip of the coffee-chocolate mix; look out at the blue sky and fluffy clouds beyond my windows; and nod. Yes. Good.

Thinking of my mother

2006-04-14T22:14:00.000-07:00

I think about my mother fairly often these days. It's probably because she died of cancer when she was just 39 years old and when I was 10. I think of her, not so much because of the similarities, but because of the vast differences in our cases and conditions.

I sign these posts "Lymphoma patient" even though I know that some health advocates would frown on the word "patient." I've read the articles that tell me that I must consider myself a fighter battling this disease. But I don't buy it. I don't buy the argument that there is much that I can do as a battler, other than allowing myself to be patiently treated by folks who know how to use drugs capable of actually fighting the cancer cells in my body.

That's what I can do: be patient and be a patient.

But that's clearly not the approach my mother took forty-three years ago with her disease. She fought it off for as long as she could even though she must have known that the battle was a forlorn hope. She endured the ever-increasing pain and discomfort of multiple surgeries and seven months in a hospital bed, because, I imagine, she wanted to see each of her six kids at least one more time... every week, one more time.

I don't know for sure, but I can't imagine why else she would have gone through all that except for that one extra chance to see all of her kids and to hold her infant daughter who was given her name. She had to have known that she'd never hear "Mama" from her youngest child. She had to have known that she'd never have the chance to help her decide between short hair, long hair, ponytail? She'd never get the chance to help any of her kids with high-school chemistry homework (something she understood so well). But by battling on through those painful months, she did get the chance to see her infant daughter's scalp fill with luxuriant black hair. And that, I'm guessing, was a good thing.

She held on to get that Mexican Lime delivered by her son from the soda fountain at The Parrot. I don't remember what we talked about that afternoon or even if we talked. But I do have some vague recollections of stories about my mother's high school days in the Parrot. Maybe that's what we talked about that afternoon. (But then again, I may have heard the stories second hand from my father who grew up in a different town, but had no doubt heard tales from my mother about the place. Maybe my older sister heard the stories and recounted them to me. Dunno.)

I wish that one of my mother's college chums who were the nuns at our school had handed me a notebook back then and instructed me to write down things about my mother. But that didn't happen. (It would take a nun from a later generation to instill in me a sometime habit for journal-keeping.)

My youngest sister who has our mother's name thanked me for this journal the other day and noted, "It is a nice side that I caught a small glimpse of a mother I never got a chance to know."

Indeed. And because I do have at least a few memories of her that keep weaving their way into my thoughts these days, I guess I'll continue to share a few more of them.

There are occasional sharp but absurd recollections that keep popping up these days. One of them comes when someone asks, "How are you?"
If the question comes from a nurse of doctor, I'll do my best to give as full an answer as they seem to need at the time. (Although I usually forget to ask why the sound of my blood pumping is so much louder in my ears even though the BP and heart-beat are generally good.) But usually I'll answer with "I'm fine," or "I'm OK." If it's a family member asking, I'll often expand a bit, but with other folks, I figure that the simplest response is the fairest and best.

But whenever I respond, I think back to a recess in 4th grade when one of the nuns who wasn't one of my teachers asked, "How's your mother?" I responded, "She's fine."

I don't recall whether it was the same nun who asked the question or someone else who'd been called in by her to intervene, but one of them soon had me off in a corner of the playground, next to the heavy pipes that separated the blacktop from concrete stairs leading to a lower mezzanine level of the school.

"You know, son, that your mother really isn't 'fine'. She's in very serious condition and is in a great deal of pain." The scolding may have gone into greater detail. I doubt I defended myself. But even then I knew what I wanted to defend my response.

Although this may well be pure construction, I believe that even then I wanted to say to the nun who scolded me with such a look of pity, "Yes. I know she's in serious condition. I know she's in a great deal of pain. But I saw her the other day and she was smiling and talking. She seemed happy at that moment. I'll count that as 'fine' under the circumstances which both of us understand."

So, if you wonder how I am today: I'm fine, thanks.

Lab results

2006-04-14T19:34:00.000-07:00

Today's lab results were pretty much on par with the others this week. Both my white- and red-cell counts are low, but slowly climbing, platelet count went down today, but still the blood draw hole in the vein managed to clot quickly enough. In other words, things are on par. A bit of hopeful news is that the tenth day after a chemo session (which today was) is known as the nadir. It's the day when many of these counts will (in most cases) drop to their lowest levels during the three-week "recovery phase" of the treatment.

Of course, it didn't work out quite that way after the first chemo session. Instead of rebounding after the nadir-day, some of the counts continued to crash two weeks ago, eventually requiring last Thursday's transfusion.

We'll see.

Today's clinic visit

2006-04-14T08:23:00.000-07:00

I have another quick clinic visit to the infusion room scheduled for later today. Just as I did yesterday. Just as I probably will have on Monday.

On these visits, they take a blood sample (CBC) and get quick results from the lab. Depending on the results, they might give me a shot to try to spike one of the componenets -- or, if things are particularly bad with the red cells, schedule me for a transfusion as they did a week ago Thursday.

Yesterday's results were OK. The hematocrit count that they watch closely had gone up slightly in a day. The white blood cell count had also risen just a bit, although it's still dangerously low (which makes me easily subject to infection, they tell me). Platelets are also low, which probably means that I should avoid nicking my head if I try to shave off the last remaining isolated strands of hair.

As I understand it, these problems with the blood counts are being caused both by the chemo drugs (which can have similar results with any cancer), and by the cancer itself which had affected my bone marrow -- the body's factory where these blood components are made.

So anyway, I'll stroll over to get it checked again this afternoon.

History #2: The biopsy. Attempt number 1.

2006-04-13T19:17:00.000-07:00

When we left off on this history, I'd been scheduled for surgery on Friday and had signed the sheaf of consent forms.

On Thursday night at almost midnight, I realized that I was already a bit hungry, so I made a snack, had some juice, and tried (mostly unsuccessfully) to fall asleep before my alarm would ring at 6 am. I managed to nod off for at least an hour or two, but was awake and in the shower just after the alarm rang. I walked over to the hospital and was there at the appointed 7:30 time.

The waiting room was mostly empty. There was no sign of the guy at the desk, but instructions were taped to the wall to call a number if that should happen. I did that.

I took a seat in the opposite corner of the room from its only other occupant. She was a 30-ish woman who sat bolt upright and unmoving in a chair, staring ahead to a door. She didn't fidget. She didn't thumb through magazines. She stared ahead.

The desk guy briskly walked into his cubicle. While talking on a cell phone, he scanned the room, pointed to me and asked, "What's your name?" I told him. Still responding to cell calls with brief replies like, "OK," and "I'll be right in," he pulled a few papers out of a file, checked off something, and then said to me. "OK. Have a seat. I'll come back in and get you when they're ready for you in pre-op."

I sat. I fidgeted. I thumbed through magazines. The woman across the room still stared straight ahead. But she jumped a bit when a tall young man in full surgical scrubs came through the door. He uttered her name as a question. She nodded. He knelt on one knee in front of her.

I could hear only some of what he said and nothing of her responses. I tried not to, but couldn't help but listen.

"We've just finished the surgery on ___ ." "We had to put a plate and bolts into his leg." "He's young. His body can handle this. He should be able to recover without problems." "No, the bolts will stay. They're part of his leg now." "He'll be on crutches for four to six months." "He's still in surgery now. Another team is evaluating him. There are sometimes problems with the seat belt, but it looks good for now." "We'll come and get you when he's in the post-op recovery room."

The hospital where I go for all this is a large public hospital owned by the county and operated by a university medical school. It's also the major Level I trauma center for a multi-state region. It's the place you should want to be sent if you've been in a car wreck or have suffered a gunshot wound or serious burns. But it's not the place that most people with expensive insurance plans would go for the kind of "ambulatory surgery" that I was there for. I don't have an expensive insurance plan and I've been going to the clinics here for a few years, so this is where I am -- where I'll stay.

But one odd advantage of being in this kind of place is that one can hear and vicariously experience enough pain and suffering in the place that whatever one's own situation might be, it can't help but seem petty by comparison. That woman across from me probably watched her sixteen-year-old son leave the house the day or the night before as a typical indestructible sixteen year old. But sometime during the night she'd been awakened by the call. "There's been an accident." I imagine that she'd been staring at that door for hours. Now, she seemed to slump a bit more in her chair. I imagine part of it was relief. "He's young. He should be able to recover from this without problems." Part of it was the recognition that so much had changed.

It was almost 9:30 before the desk guy called my name to follow him into the pre-op area. The waiting room had filled up by then with a few families there for other ambulatory procedures.

I changed into hospital gowns, sat in a comfortable easy chair as a nurse threaded in an IV needle. "We're giving you fluids for now. This will be used for the anesthesia when you're taken to the operating room." She verified that I hadn't had anything to eat or drink since midnight. Several minutes later an anesthesia nurse came in and verified my signature on a consent form and once again verified that I had fasted since midnight. She explained again that I'd be given anesthetics in the operating room, that a breathing tube would be put in my throat after I was out, and that I'd wake up in a room next door.

And then I waited and waited as fluids slowly dripped into my vein. And waited.

I listened as a nurse ran through the fasting checklist with a patient next to me, divided only by a light curtain.
"Anything to eat or drink since midnight?"
"Well... I had half a beer at about six."
"A beer?"
"Yeah... Maybe one and half..."
"Uhh... This is a problem."
The nurse moved away to the station where I could see her making a few phone calls.

An anesthesia nurse came into the next cubicle. "You drank a beer this morning?"
"Yeah... Maybe one and a half."
"We won't be able to do the surgery today. You shouldn't have anything to drink, but especially not a beer."
The anasthesia nurse left. The pre-op room nurse who seemed to have a better raport with my neighbor returned.
"OK. We'll have to reschedule the surgery, but tell me how many beers you had."
"Well... I guess it might have been three and a half."
"Anything else? Food? Aspirin?"
"Well, this really hurts. I took a couple of aspirin this morning."
"Just two?"
"Well, I guess... like, maybe six since last night."
"Umm. That's not a good idea. This would have been a real problem if we had taken you into surgery."

So my neighbor dressed and worked out with the nurse how to get a note for his parole officer to explain why he'd have to come back again next week. The nurse explained again how dangerous aspirin and beer could be before a surgery.

And I waited.

The nurse who had given me the IV explained that they'd had a few trauma cases that were delaying my surgery. I heard her say to another nurse, "There's a patient with an open chest coming in on the helicopter."

Several minutes later, at almost 10 am, McDreamy Intern whom I had met a few days before in the surgery clinic came by in full surgical scrubs. "Your surgery has been delayed. We had a busy night and we're still getting slammed with trauma cases." He offered me the option of waiting an hour or two -- "We'll probably be able to get to you then" -- or rescheduling for Monday with a different surgeon. No offense, but I really didn't feel all that comfortable waiting to become the last patient operated on my a surgeon who'd "been slammed all night." I took the reschedule option.

The nurse disconnected the IV. I dressed. I was given a lunch voucher for the cafeteria. I realized that the friend who was waiting for a call to give me a ride home was still waiting. And the cafeteria was switching over from breakfast to lunch foods. Since I'd been told not to bring valuables, I didn't even have enough money for a pay-phone call. I searched out an ATM, the Cashier's Office that could give me change.

I called my friend to tell him he wouldn't have to pick me up. But he was ready to do it, and said he'd be there in a about twenty minutes.
"But, I have a lunch voucher that's only good for today. I'm pretty hungry. I'd like to use it, but the cafeteria isn't open yet for lunch."
He offered to meet me in the cafeteria at about 11:30 -- in an hour.

I wandered through the hospital's view park before heading into the cafeteria which was now serving lunch. I used every penny of the $7 voucher they'd given me and a few more for a hot-plate meal, a large salad, a coffee (finally!), and a juice. It was a lot of food, but I devoured all of it. I actually like their salads. The hot-plate specials are typically tasteless. But it's what I've come to expect. It was ~~good~~ OK.

My friend arrived at precisely 11:30. I finished the lunch. I looked through a stack of quarters I'd collected during the morning. Most of them were 2005 models. I asked my friend who collects the state quarters if any 2006 quarters had been released. I then I saw it: 2006. "What does the Nevada quarter look like?" "I haven't seen it." I handed him a shiny new Nevada quarter. He was delighted. Which was good.

I headed home to wait another two days for the surgery which had been rescheduled for Monday morning.

Shaving the scary-monster hair

2006-04-12T17:56:00.000-07:00

Before I left for yesterday's treks and appointments, I decided to do something more about the scary-monster hair clumps that had survived a few days of vacuuming. I first clipped and then shaved the top of my head, making it into something more like a white-skulled clown cap. I didn't have time to deal with the hair that was still left at the back of my head, so what I ended up with was some sort of approximation of male-pattern baldness.

But even that was soon to go away. While I was sitting out in the sun at the hospital's view park waiting for an appointment, my head started itching a bit. Checking to be sure nobody was in the same general area, I rubbed those locks at the back of my head and realized that they, too, were ready to go. I found a windy corner of the elevated park where the wind was whipping through toward the freeway green belt. The wind there was even more effective than the vacuum. Large clump flew away as I gently rubbed. And now some clumps of my hair will probably become a part of the nasty nests built by the nasty non-native starlings that have settled in this area. (They're fond of using garbage for their nests. They'll use cigarette butts, tossed off tire pieces, condoms, hair, plastic tidbits, along with twigs and grass in their stinky nests. Ask in the comments if you'd like to know how I know this.)

But even though I know that this concern about hair is one of the sillier things to focus on in this situation, I've been reminded by emails from my sisters that I'm not alone.

One of them who has watched several friends go through chemo decided last year to try one more time to grow her hair long -- the way she wore it through college. She's doing it not in some forlorn hope of retrieving lost youth, but to be able to donate it to Locks of Love, a non-profit organization that gives hair pieces to children 18 and under who are suffering hair loss for any medical reason.

I know I'm lucky to have maintained a full head of hair for as long as I have. But if it's hard for an old guy like me to get used to the hair loss, it would be even more devastating for children.

Another sister sent this story (in which I've changed the names) that reminds me that I'm not alone in this:

I've known and adored a couple for nearly 26 years. Last year, just after Mike finally retired, his wife Jane was diagnosed with breast cancer. Jane was loosing her hair to chemo when Mike decided they could enter this piece of the battle together by a ceremonious mutual shaving of the heads. Well, Jane's hair has grown back to a beautiful head of 1" gray hair. But Mike is still wearing the spandex cap beneath a distinguished cap (you know, the kind that snap in the front). I saw them on Sunday and realized, "Oh no, Mike can't walk out of this battle with Jane in quite the same way." You see, most of us really do know he did not shave the whole of his head as he was not so secretly donning a toupee for years. What to do? What to do? He looks rather cool in that spandex cap and personally I much prefer it to the toupee!

Well, yes. I understand. It's tough to get used to the changes that seem to make us different from whatever image of ourselves that we carry.

And one more note: another friend of my sister sent us both a reminder of the Flowbee -- an item that used to be widely advertised on late night TV. Maybe I was thinking of that vacuum-clippers combo when I first put the suction nozzle to my head. The advantage of chemo is that we don't even need the clippers.

Rilke: Where did that come from?

2006-04-11T20:17:00.000-07:00

I hadn't thought of Rilke during my frequent walks today. The vaguely remembered fragments of his Ninth Elegy hadn't been consciously in my mind until I wrote the penultimate paragraph of the previous post.

I hadn't thought of Rilke as I stopped to admire the aggressive green of a laurel in the park behind the hospital. I thought instead of looking at the greens of the laurel and rhododendron last Spring as I was contemplating a redesign of a web site that I manage. I thought of web pages and not of Rilke as I stopped to contemplate the laurel this year.

But somehow, the poem was thinking through me.

Why, if it could begin as laurel, and be spent so,
this space of Being, a little darker than all
the surrounding green, with little waves at the edge
of every leaf (like a breeze's smile) - : why then
have to be human -- and shunning destiny
long for destiny?....

Until I wrote the previous post I hadn't thought of Rilke's Ninth Elegy even though I'd read it dozens of times years before while my best friend from grade school lie dying in a hospital room a few blocks away from my room. I read the Ninth Elegy instead of visiting a friend who was dying.

Oh, not because happiness exists,
that over-hasty profit from imminent loss,
not out of curiosity, or to practice the heart,
which could exist in the laurel......
But because being here is much, and because all
that's here seems to need us, the ephemeral, that
strangely concerns us. We: the most ephemeral. Once,
for each thing, only once. Once, and no more. And we too,
once. Never again. But this
once, to have been, though only once,
to have been an earthly thing -- seems irrevocable.

Larry and I had been friends throughout late grade school in that way that only adolescent boys can be friends. I'd moved to a different town with my family and we slowly lost contact during high school until senior year when both of us would see each other frequently during geeky (and freaky at times, since this was the 60s) speech meets. Somehow that old friendship reignited. We became roommates during the first year of college. But then both of us went our different ways again and we pretty much lost contact for three more years. But then Larry returned to the same school where I was. We were, of course, different people by then with different interests and goals, but when he came back to town we took a hike with a third mutual friend and realized that a real spark of friendship had remained.

A week after that hike he was in the hospital with a virulent diabetes-related infection. He'd already undergone a major surgery. But he was dying. I visited him once. I saw the bandages that covered the three quarters of his face that had been removed. I listened as his lawyer-father methodically explained the many reconstructive procedures that would be necessary after the doctors had staved off the infection.

I visited him once, but only once.

Then I started reading the Ninth Elegy under a single lamp in my dark room. I read the poem and thought of my friend who was dying, but whom I could not bring myself to visit again. I also thought back to the many years before when my mother was slowing dying from a cancer that, along with the radical surgeries that were the only way they knew to treat it back then, was slowly taking away her entire guts. I'm sure I thought especially while I read the Ninth Elegy of a request I'd been given by one of the nuns at school -- one of my mother's college friends. I'd been tasked with getting a "Mexican Lime" at a downtown soda fountain and taking it up to her at the hospital.

And, I recall and recalled then, that the fourth-grade me had resented the request. I suppose I would have preferred to do nothing with my friend Larry instead of doing something for my mother. But I did it anyway. I moped downtown to the soda fountain, steeled myself to enter that den of mean high-school kids, ordered the drink, and made my way up the steep hill to the hospital, still worried that the icey drink would be completely melted by the time I got there.

And it wasn't so bad by the time I got there. In fact, it had been an enjoyable Spring walk. Later on, I would realize that she hadn't cared that the drink was warm and diluted from the melted ice. She had just wanted an indigestibleible taste of her Spring high-school days in that soda fountain. And she wanted to see her son. And talk to him. And it was good.

I thought of that as my friend lie dying in a different hospital, but I still couldn't bring myself to visit him.

And so we keep pushing on, and trying to achieve it,
trying to contain it in our simple hands,
in the overflowing gaze and the speechless heart.
Trying to become it. Whom to give it to? We would
hold on to it for ever....Ah, what, alas, do we
take into that other dimension? Not the gazing which we
slowly learned here, and nothing that happened. Nothing.
Suffering then. Above all, then, the difficulty,
the long experience of love, then -- what is
wholly unsayable. But later,
among the stars, what use is it: it is better unsayable.
Since the traveller does not bring a handful of earth
from mountain-slope to valley, unsayable to others, but only
a word that was won, pure, a yellow and blue
gentian. Are we here, perhaps, for saying: house,
bridge, fountain, gate, jug, fruit-tree, window --
at most: column, tower......but for saying, realise,
oh, for a saying such as the things themselves would never
have profoundly said. Is not the secret intent
of this discreet Earth to draw lovers on,
so that each and every thing is delight within their feeling?
Threshold: what is it for two
lovers to be wearing their own threshold of the ancient door
a little, they too, after the many before them,
and before those to come......., simple.

Here is the age of the sayable: here is its home.
Speak, and be witness. More than ever
the things of experience are falling away, since
what ousts and replaces them is an act with no image.
An act, under a crust that will split, as soon as
the business within outgrows it, and limit itself differently.
Between the hammers, our heart
lives on, as the tongue
between the teeth, that
in spite of them, keeps praising.

Praise the world to the Angel, not the unsayable: you
can't impress him with glories of feeling: in the universe,
where he feels more deeply, you are a novice. So show
him a simple thing, fashioned in age after age,
that lives close to hand and in sight.
Tell him things. He'll be more amazed: as you were,
beside the rope-maker in Rome, or the potter beside the Nile.
Show him how happy things can be, how guiltless and ours,
how even the cry of grief decides on pure form,
serves as a thing, or dies into a thing: transient,
they look to us for deliverance, we, the most transient of all.
Will us to change them completely, in our invisible hearts,
into -- oh, endlessly, into us! Whoever, in the end, we are.

Earth, is it not this that you want: to rise
invisibly in us? -- Is that not your dream,
to be invisible, one day? -- Earth! Invisible!
What is your urgent command if not transformation?
Earth, beloved, I will. O, believe me, you need
no more Spring-times to win me: only one,
ah, one, is already more than my blood can stand.
Namelessly, I have been truly yours, from the first.
You were always right, and your most sacred inspiration
is that familiar Death.
See I live. On what? Neither childhood nor future
grows less......Excess of being
wells up in my heart.

So maybe Rilke walked with me today through the Asian supermarket aisles, past the rice balls, the Canadian king salmon. And maybe there were others as well. It was good.

A good day

2006-04-11T17:27:00.000-07:00

It's worth celebrating these things: This was a really good day.

I live in a place where Spring comes early and stays around for well over its allotted three months. So, it's been Spring for a long time, but today felt and smelled more Spring-like than most of the other days. (But, please consider that I don't get out much, so I may have missed a few along the way.) Almost all the trees have their leaves by now. Spring flowers are into their second coming with new varieties replacing the things like cherries blossoms that have mostly fallen away.

It was a bit chilly with a wind that could occasionally be almost cold. But that's what's supposed to happen in Springtime, right?

I'd decided to head over to the hospital before going to the SSA office so I could pick up some copies of rent receipts and such that I'd left with the clinic's financial counselor but had neglected to copy. When I walked out the door of my apartment building, I was greeted with that fresh Spring smell. I think that alone made me feel better. I had more energy than I've had for weeks.
(But, in fact, my good mood and energy probably had more to do with the two units of blood they had transfused into me on Thursday to overcome the severe anemia that's being jointly caused by the lymphoma and the chemo treatment.)

So I walked as usual the eight flat blocks between my apartment and the hospital and quickly got the documents that I figured I might need for the Social Security folk. (They hadn't asked for them, but I figured they would if I didn't have them handy -- one of those odd superstitions I hang onto, eh?)

I left the hospital quickly to catch a bus that would take me to the SSA office, but damn! The bus was pulling out just as I got to the corner. So the decision: Do I stand at the stop and wait for at least 20 minutes or do I walk? I started walking.

The SSA office is only about 10 blocks from the hospital --at least it is 10 blocks for one of those crows that were out loudly enjoying the Spring weather. It's a bit farther for the land-bound among us. A freeway separates the two buildings which are also separated by about 200 feet in altitude. In other words, it's a downhill walk from the hospital to the SSA -- so steeply downhill that several apparent paths from one area to another are blocked by steep hillsides.

I was feeling good enough, however, that I decided to try to thread my way down there along a path I wasn't all that familiar with. And I made it without turning around and backtracking. (Another of those superstitions.) The path I took added four or five blocks to the trek, but I didn't have to turn around and go uphill once. That was good.

And that continued at the SSA office. The magic password worked. The guard at the door of the office had appeared on Friday to be utterly unwilling to respond to questions. But today, when I uttered the name of the woman I'd talked to on the phone, he responded with something close to a smile. That name was all I needed. He called her. "She'll be right out," the guard said. And what's even more remarkable, she did come right out.

She asked me to sign my name to three identical information-release forms. And that's it. I don't know why the woman I talked to on Friday couldn't figure this out, but that's behind us. It was good.

So, despite my meandering stroll to the office, I still had two hours before my first appointment at the hospital. And even better, my G-I tract which has been cranky for a few weeks appeared to be cooperating this morning. So I meandered some more, past and occasionally through the shops of the Chinatown neighborhood where the SSA office is situated.

I meandered downhill to a bus stop where a bus was waiting. Rode it uphill to a stop where I caught another bus for a severe uphill ride to the hospital. I even trusted my GI tract (and my knowledge of hospital restroom locations) enough to have a lunch of plain white rice, hospital jello, and apple juice. And it actually tasted ~~good~~ OK.

I successfully negotiated a single blood draw for two clinics, had two pleasant and informative appointments, got a shot to try to spike my white-cell count, and headed home.

And that's the kind of utterly unproductive day that I count as "good" right about now.

But another thing about all this struck me during one of my walks: I was feeling good because I realized this might be one of the last pleasant Spring days like this that I'll get to experience. So why not enjoy its plain and simple favors?

I can't quote Rilke by memory anymore, but somehow in those cavernous mental files of forgotten pages read, a word rings out: "Once!". Maybe I'll go look up the poem. But, for now, that one word is enough. Once is enough.

Today's busy schedule

2006-04-11T07:47:00.000-07:00

I have a packed "social schedule" today.

I have not just one, but three appointments at the hospital: one with the counselor (who I haven't mentioned, but may get to someday), one with my primary-care physician, and one with the "infusion room" oncology staff who will take a quick-result blood test and give me a shot if something is called for because of the anemia. I'll have to try to negotiate with the oncology nurses upstairs and the clinic nurses downstairs so that I can get all of the blood draws at one time with only one poke.

Before that, however, I have to make yet another attempt to wedge my way through the nearly impenetrable firewall at the Social Security office to sign some papers. I tried to do that Friday, but didn't make it through the magic door. I hope that I have the magic words down today to make it work.

Scheduling a biopsy

2006-04-10T16:03:00.000-07:00

So, for a bit of history as best remembered:

I first noticed an enlarged lymph node under my right armpit in January. Or rather, I noticed an uncommon b-b sized bump which I assumed was an enlarged lymph node.

My primary care doctor was out of town for the month, and although I had several non-medical appointments in the clinic, I didn't press for an appointment with a different physician because of the bump. By the time my doctor had returned in February, the bump had grown to pea-sized and I could feel another smaller one under my left armpit. I was also feeling some muscle cramps in my right arm and a bit of uncommon constriction in my right chest. I figured that might be from favoring the right side while sleeping. I mentioned those issues to the doctor as well.

She told me that a number of things might cause the lymphadonopathy, but she'd get a few tests to pinpoint it. I had a chest x-ray later the same day to rule out chest problems. I then had an upper-chest CT scan a day later.

When I saw my doctor again a week later, she had good news on the chest x-ray. There was no obvious problem with the lungs or anything. The CT scan was less conclusive and so she sheduled me for what she thought would be a needle biopsy of the bump. That required a visit a few days later to the general surgery clinic where a young intern (who, by the way, looked like he could have become a cast member of Gray's Anatomy if he'd pursued a different career). He checked things out and then left to consult with the surgeon.

He returned a while later and introduced the surgeon who briskly reexamined the area. The surgeon announced that she'd have to do an "excisional biopsy" because "we wouldn't get enough tissue with a needle biopsy." With her hands moving like a knitter describing a pearl stitch, the surgeon explained that she'd remove the enlarged node and might remove more if she found a large string of affected nodes. She also detailed some of the issues that might (but probably wouldn't) arise.

"Questions?"
"No, I don't think so."

The surgeon handed some papers to McDreamy intern; said, "We'll get you scheduled;" and briskly left. The intern shuffled the papers far less briskly, and asked me to stay in the examination room while he got the scheduling process going.

So I waited. And waited. After about a half-hour, I began to worry that I might have misunderstood. I got dressed and was ready to leave when McDreamy returned with an apology. "There's an awful lot of paperwork for this," he said with a smile that seemed to require my response, "Oh, that's fine. No problem. I've seen the paperwork this place generates."

He took me to the office of the Patient Care Coordinator (PCC) who smiled and offered me a seat as he arranged a hefty sheaf of papers. "OK," he said, "We have a few things for you to sign." He told me that I was scheduled for surgery on the following Friday, February 24 but he'd have to go through a few things first.

Even though it was clear that he'd done this a thousand times before, the PCC began to explain each of the papers he offered for my signature. He thoughfully paused for questions without any of the droning delivery that's so common among those who have to repeat similar phrases many times per week. He seemed genuinely concerned that I should understand all of these things, including the multiple consent forms and the pre-op instructions. He explained that I'd need to have a ride home.

So there it was. Two days later I was to be in the surgery waiting room at 7:30 am without aspirin or ibuprofin in my system. I wasn't to eat or drink or smoke anything after midnight Friday.

The vacuum and the hair

2006-04-10T10:56:00.000-07:00

I'll do explanations and introductions later. For now, allow me to start with the vacuum (which we'll get to in a bit) and the hair.

My hair started falling out about three weeks ago. I'd been warned. I was expecting this. That was in the second week after my first chemo session.

My beard was the first thing to go. The chin was itchy in a common "it's time to trim the beard" way. But this time when I scratched, I came away with clumps of hair in my fingers. Oh oh. It's happening.

I shaved off my goatee the next morning but left the mustache (which has so far escaped the shedding) and a bit of a soul patch under my lips. I figured I'd just get rid of what wanted to go and leave the rest. The hair on my head was shedding a bit more than usual, but I'd already clipped it to a shorter-than-normal length and figured I'd stick with that until it became more set on leaving me.

Far more hair than usual fell out when I showered, leaving it thin. But it still looked OK to me, and that's what mostly matters at this point since I'm almost the only one these days who sees my head without a baseball cap.

That all changed a couple of days later when I woke up with a marooned sideburn on one side of my head. I figured the bald patch above the sideburn would look pretty wierd under a baseball cap, so I clipped and shaved both sides of the head, leaving odd 45-degree angles of baldness from the front hairline to the back of the ears. I clipped the rest of the hair still shorter, but there was still enough left to present a vague excuse for hair.

Until five days ago. Even rubbing my fingers gently over my head would give me a handful of hair. It was time to take it off, but I was too tired by that point to stand in the bathroom and run the clippers and then clean up the mess. I left it to shed.

But the shedding required frequent vacuuming of any area of my apartment where I'd stayed in the same place for more than a minute or two.

Yesterday, I came up with the solution for the moment: Vacuum my head instead of the floor (of course, we're talking a suction-only vacuum and not something with a revolving brush). It worked almost as effectively as a shave. I'm almost completely bald after a few passes with the vaccum. Almost. I actually have a kind of scary-monster head now with odd patches of hair still sticking out here and there from a bald pate. I'll stick with the hat.

(Note to producers of low-budget horror flicks: Head off to a chemo ward and ask for extras there if you'd like to save some bucks on makeup for your monster mobs.)

So, yes. That's the silliest part of it all. It's absurd for me to be so worried about my hair. But it happens. And whatever happens on this course is the kind of thing that I'll be dealing with in these occasional posts.

Rilke, Beckett, etc.

2006-03-01T00:03:00.000-08:00

This blog was started on April 10, 2006 with this post after its author had been diagnosed with non-Hodgkins (T-Cell) Lymphoma in March, 2006.

This and a group of other posts are backdated to March 1 to provide a central place for the author to store manual subject indexes to some of the posts with real dates.

Ninth Elegy epiphany: dredging a line from old memory
Why Rilke occurs to me at this moment
Does this blog honor or ignore Rilke's advice, or Beckett's?

Hair issues index: Losing it, cleaning it, covering it

2006-03-01T00:02:00.000-08:00

It's admittedly one of the sillier aspects of being treated for cancer, but losing hair is also one of the more obvious results of (some) chemo regimens. These posts reflect on that.

Vacuuming shedding hair directly off the head
Shaving the-scary monster hair
Exposing bald head to the sun
A stylish cap option

Backhistory index: First Symptoms, tests, biopsies, chemo

2006-03-01T00:01:00.000-08:00