Blood status

When I have contacted people lately and they say, “How’s it going?,” it seems easier to say, “OK” as opposed to “Well, in December I found out I have blood cancer”. This is just too dramatic for me because if I were in their shoes, it would ruin my day. Period. It feels less dramatic to say “…i have Lymphoma” hoping that the inquisitor doesn’t know exactly what that is and more exchange can happen before I ruin their day. Speaking of a ruined day, I have been donating blood regularly for years with my obscure A- blood type and was closing in on the 5 gallon mark only to discover I may not be able to donate again. I need to dig deeper about this because they consider the 5 year mark after chemo with no reoccurrence a “cure”. I didn’t think this would preclude me from anonymously helping my fellow A- humans but I’m really bummed out.

Donate blood. It’s easy, doesn’t take enormous commitment and is a free method to spread the Hope. Someone has to fill my void!

Paid yet another visit to LHCP this morning to check out the status of my cancerous blood. Levels are better than the draw on 1/6

	B4 Chemo	2 wks > #1	#2	2 wks > #2
Neutrophils	3.61	0.18	2.80	0.45

I will keep you posted on the numbers but , as a reminder, this is the number that indicates my infection fighting ability. Theoretically, it should start climbing back up before Lymphemo #3 next week but I continue to “coat sleeve” my hands when touching anything in public. The family continues to complain about finding fine little hairs in their food but I still have eyebrows, lashes and enough arm hair that I fit into the fairly ubiquitous, “bald guy” look. I may not experience the full Judge Holden (McCarthy’s Blood Meridian¹) effect.

Last thought: Please divert some of your positive energy to Bob G. who is recovering from extensive shoulder surgery following an epic, wipe-out at the local ski hill.

¹hey kids, you don’t need the Saw movies with books like this around, trust me  

Ativan (lorazepam)

Over the past couple of days I have been coughing more and experiencing some mild chest pain. My thoughts immediately gravitate toward, “Is chemo working?” This may seem silly given my hair loss and other concrete reactions but when they describe a cancer as “aggressive” could it be working faster than the chemo? I decided to call Liz to tap her knowledge bank. As always she is positive and full of info. It could be three things: slight pain from the chemo working, pain caused by anxiety about whether chemo is working or maybe a viral infection or more bronchitis brought on by reduced immunities. I should confess that I have rarely run to the medicine cabinet to resolve my health issues. I’d rather sleep it off and complain to my family. So this new phase in my life, “better living through chemistry”, is a change I have yet to wear comfortably.

Liz called in a script for Ativan. I decide to add yet another pill to the regiment but to be safe, I will start dosing at night. Saturday morning I wake refreshed and look at the clock, 8:30am; almost an adult record. I’m cursed with a Moore gene that makes me feel sluggish if I’m not up by 7am regardless of the time I climb into bed.
No pain. As the day rolls on, I run some errands with Summer and by 2pm I am asleep on the couch. The pain is creeping back but Ativan seems to help me sleep.

I venture online Saturday evening looking for anecdotal “chest pain” comments from other NHLers and can’t find anything positive. This stinks. More pre-, post- and during chemo pain stories that bring me crashing down. Although his goes back to one of my early blog comments that everything comes with a price, I’m done with anecdotes until I’m finished with Lymphemo. Two other thoughts to consider: my lymph nodes are now overtaxed with more dead cells than they ever would have imagined and they are letting me know their pain. Two, the necrotic tissue in the center of the lymph nodes could calcify so whenever I jump rope, I sound like a marble bag. I know, i know…just don’t jump rope.

To Whit…

We have a horse farm at our humble abode where Laurie operates her dressage training facility, Timberlane Farm. Typically, activity slows down in January and February to give the horses some rest and the past few weeks have been brutally cold which also takes some fun out of riding for both parties involved. The natural break, as well as my unexpected change of condition, has given Laurie time to “get organized”. This organization could not be possible without the continued assistance of Whitney P. The adage, “When momma ain’t happy, ain’t nobody happy,” seems to be true at Timberlane Farm so anyone who can help make momma’s life easier is welcomed and appreciated.

Having said that, my newfound shut-in status has given me more time to consider painting; something I have not made time to do. I approach painting in marathon sessions where paintings are completed in huge blocks of time often into the wee hours as opposed to a disciplined series of sessions. I came across an image of Picasso’s Le Reve (The Dream) and really wanted a copy for our bathroom so I cranked out a copy to get the ideas flowing. This is the $50M painting that Steve Wynn put his elbow through and had to cancel the deal to sell it for $139M. Although I’m a geek for contemporary sculpture and work by “minimal” artists, I started a project several years ago to produce 100 horse paintings in order to better understand the aesthetic side of my wife’s passion. I’ve never sold any of the work aside from some greeting card reproductions that we produced as gifts in 2007. Laurie asked me to produce one for Whitney as thanks for all the work she has done to help get Laurie organized.

So that is, “To Whit #30” and Whitney doesn’t even know yet.

On the health front, still steady. I have been noticing more stray hairs on my desk, around the bathroom sink, etc…although I have heard that many people lose their hair in quick clumps, mine seems to be clinging on. Everywhere the hair gets rubbed by clothing, there are large bare spots. I’ll keep you updated as the shedding continues. Secondly, the cough seems to be hanging around. Not as debilitating as before the diagnosis but a persistent cough none the less. Coughing makes me anxious to get through the next Lymphemo on Feb 3rd in order to a get “progress report” CT and a full work up by the Onc.

Robert Schimmel

Some of you may not know that I am a reader. I have spent thousands of dollars in my adult life purchasing books. I like everything…Fiction, Poetry, Graphic Novels, Art books, Magazines, How-to Tech books, etc. I savor reading and rarely can read a book in one sitting. This has more to do with priorities than any other excuse but my books are my friends. They are stacked and hidden around our house with more book boxes stored in the basement. I often crack them open to find familiar words and phrases or to look up an image or reference. I just spent the past few hours galloping through Schimmel’s Cancer on $5 a Day* *chemo not included. He is a stand-up comedian who was diagnosed with NHL Stage 3 in 2000 and recounts a harrowing journey through chemo treatments that I have yet to experience. He had so many setbacks that if any of you picked up the book, you would have cause for concern. You may question my reporting accuracy and truthfulness.

I will take this tidbit away. After receiving the news, he was having night sweats, chills and they found enlarged lymph nodes under both arms, he called his doctor at home in the throws of an anxiety attack. He was pleading for a single Xanax and his Onc said, “No.” The Onc explained his rejection. “If you were asked to fight Mike Tyson you could hire a trainer, a nutritionist, order tapes from all his previous fights, begin road training, establish a fight plan and start training for the fight of your life OR you could take a Xanax. Go home, get on the Internet and become an expert on NHL. Read forums, blogs and research sites. Start training.” Now that’s wisdom.

Schimmel’s tortured journey is yet another example of how unique life’s experiences must be. Singly enjoyed or suffered by each of us in order to give our short time here meaning.

My mouth is a little tingly, my stomach was a little queasy today and I’m shuffling through various laxatives like a man twice my age but this is all manageable.

Change 2009

Not too bad

This go round has been uneventful although I thought I was running a fever this morning; the baby thermometer says otherwise. Although I am not diligent about the Compazine, I do have some bouts of queasiness that I seem to be able to will away. I have been able to keep a respectable level of energy as long as I perform a power nap after an early dinner. I’m really into grazing these days. By following fellow Lymphomaniacs who suggest that you eat 6 small meals daily, I seem to be on a manageable routine.

Kudos have to be passed to everyone working with Gay Sykes on the meal deal (see link at right). Gay has organized many friends and family to prepare meals twice a week. This takes so much off our mental plate and there are always leftovers on which I can graze. My parents have also made time to visit every Wednesday to cook and clean which is even more heroic given the fact that they are supposed to be in Sarasota, Florida basking in sunshine and collecting shark’s teeth. It’s comforting to have family so close and concerned friends checking in.

Chemo Afterglow

Lymphemo #2 is history. When the drug bags are empty, the Baxter Flo-Gard 6200 complains with an annoying beep every 7 seconds to alert the flight attendants that I need a change. Several minutes go by each time this occurs which adds many minutes to the overall time the treatment takes. I'm not complaining because Liz and Barb tell it like it is and I would have it no other way.

Second point: Chemo is an inexact science. We uncovered some funkiness today in the anti-nausea meds. Make sure to be very curious with your attendants because, like ER, they have more street smarts than the Oncs when it comes to pre-flight medication therefore they have enough latitude when it comes to adjusting your drug regiment.

3:55pm - So another long day ends in the LHCP chemo room and once again we seem to have outlasted all my fellow passengers. The room is quiet which brings me to my final point.

Final point: Chemo and television don't mix. Each of the stations have their own HDTV and remote. Many passengers come in and immediately turn on their "stories" or some reality show where hoes be screaming and beatin' down hoes...it's just not conducive to your mental state. Now I'm no TV snob, I don't claim to only watch PBS and I watch my fair share of TV at home but in this environment, not cool. I suspect they might be saying, "Look at that workaholic. Can't he just leave his laptop at home?"

Final final point: Kidneys are processing as expected. The Red Devil has started it's exit and combined with my daily multi-vitamin, that is high in B complex, has managed to prove the color wheel theory by producing a nice, popsicle orange hue, a detail only a painter could appreciate.

Today = R- HOCP

Liz has decided to give up today and get some rest at home. She called in reinforcements and Barb is now on the case.

The Aloxi is now flowing in place of the Zofran to stave off the nausea. I'm not above acting pre-emptively when it comes to nausea or hair loss...although I'm not gonna shave my body like a swimmer; and no waxing - no Brazilian waxing, please. If you see me and my arms look like a mangy dog, you'll know why. I'll start popping Zofran which dissolves on your tongue very quickly as soon as i get home; tastes a little like Pepto Bismol if you like that kind of thing.


Barb favors the reverse chemo method so she will push the Adriamycin (H) next and then the Oncovin. These are the harsh ones so she feels it better to get these poisons sloshing around my system for a while before releasing me to the wild. If you recall, the Adriamycin comes out later in a brilliant, pink hue. My brother suggested that I draft a message in the fresh snow, photograph it and post it for you. Logistically, this might be a difficult gag to pull off given the fact that the Cytoxan (C) has yet to hang but they do have a nice rooftop deck outside the chemo delivery room. My fellow passengers might be disturbed if I wade out into the snow with my battery powered Baxter Flow-Gard 6200 IV pole(see pic) and my camera. Ah, forget it, it's in the teens outside.

Here's a pic of Barb shooting me up with the "Red Devil" (H...er, A) and now Cytoxan (C) mixed with saline is flowing away. So far, so good.

Lymphemo #2

So far so good. Met with the Onc this morning and he is pleased to hear that I'm feeling well. He took some notes on his Tablet PC, groped me and then gave me the all clear to begin treatment. They did the blood draw after we met with him which isn't the proper sequence but we are early in the cycles. My chemo nurse, Liz, met us in the hallway with a mask on. She said hello and immediately I could tell she was in the throws of a major cold. She doesn't feel right about potentially exposing me and all of my fellow immune-deprived passengers to her germs but she is bucking up and delivering the cornmash. She drew blood from my port and we patiently awaited the results.

Blood analysis came back with decent counts so I am good to go.

10:45am and still getting Benadryl, Steroids and Saline on board before R (see previous) begins. If you recall, this was the med to which I reacted the first go round.

10:55am R begins very slow. Now waiting for the other shoe to drop...is it a boot or a moccasin?

Had a pic but forgot my camera's interface cable. Will post some images later to set the ambiance.

Last note for this entry. Saw "Gran Torino" on Sunday afternoon and I can't recommend it enough. Eastwood is a force in these types of roles. After you get over the uncomfortable racism, the film is a charmer with some bursts of laughter. The Detroit setting also brings the subject matter to the forefront in proximity and economic relevance. Stick around for the credits to roll as Eastwood was nominated for the song. he croaks out the first verse but Jamie Cullum brings it home.

Perfectly Unperfect

Haven't had much to report. My journey is becoming stranger now that some level of normality has set in. I've received some new chapeaux; most notably, a fine Reggae number from Larsen complete with braids and beads. Pix soon.

Sunday started off with a bang as my arm hair started coming out. Not as drastic as my melon but the reality of having less hair than my 11 yr old son is amusing. The other byproduct of hair loss is that my facial hair has adopted a snail's pace. In 7th grade, I started shaving my peach fuzz hoping that I would soon have the full scratchy face my father possessed. I knew it would only be a matter of time but I just needed to shave. The outer reaches of my eyebrows grew close enough to my hairline that I was compelled to shave a little space in order to play down my simianess. Today, my Thursday shave has kept my whiskers at an acceptable length. After 30 years of facial hair decisions, through disposable, single, dual, triple, quadruple blades, I may be blessed with several months hiatus and that brings joy.

Lymphemo #2 tomorrow. Expect a flurry of reports.

The Deed

It's time...









Mohawkish











Charged G.B.H.







Bald is beautiful








We were on a roll








Pretty close









C'est la vie

Neutropenic

Paid another visit to the LHCP this morning with Laurie to have blood work done. This will occur 7 days before each Lymphemo. Although I was under the impression that this could be done through my port, they typically do the CBC (complete blood count) with a finger poke. I thought they would need a "drop" of blood. The phlebotomist was working my left ring finger like a milk maid trying to get enough blood for testing; I actually started to chuckle while she milked away. Shouldn't she have Popeye forearms if she had to do that several times an hour? Now we wait 10-15 minutes for the results. After a few minutes, my "blood maid" approached to apologize. My blood clotted before they could perform the test. I decided it would be most efficient to just perform a normal blood draw and within a few seconds, they had some fresh blood to test.

My lymphemo nurse reviewed the results with me and all the values were as expected. WBC is low and my neutrophils have hit rock bottom. Neutrophils are very important in defending the body against bacterial infections, and therefore, a patient with too few neutrophils is more susceptible to bacterial infections. This is called Neutropenia. In layman's terms, my ability to fight off infection is so low, I'm susceptible to almost any crazy bacteria that strolls along. I'm walking around like Howard Hughes or Howie Mandel. As if cancer wasn't enough, I'm now being driven to OCD what with all the washing, hand sanitizing and lack of door knob touching.

Next up, more hair loss and lymphemo #2.

Spoke too soon...

13 days to the hour...I have been daydreaming about walking into Supercuts or a similar establishment and asking them to wash my hair. The prank of a life time. Alas, I'm all bark and no bite. I'll ask the family to have some fun with the horse clippers in the next couple of days.

12 Days

I'm now 12 days out and do not see any weakness in the strength of my hair roots. I tug several times a day to see if there is any give. So far, the hair follicles are winning the battle.
Found a quick video that graphically sums up NHL.
Thanks to all the notes of concern and support via email, phone calls, prayers and blog comments. It makes my day.

Visualizing 2009

Although we had plans to attend another family dinner on New Year's Eve, I ran out of energy. Power naps appear to be my saving grace and I missed it yesterday. Laurie and I decided to break out a copy of "WALL-E" (xmas gift from Santa). Santa's intentions were good but he didn't check the list close enough because he delivered the Blu-Ray version which is useless to me. If anyone is interested in a brand new copy of this apparently delightful film on "high definition" Blu-Ray, please let me know...and give me a synopsis. Never fear, there was a back up plan as I was gifted a copy of, "There Will Be Blood". I didn't catch it during the initial release and read great reviews. The title seemed fitting for my journey. Manipulation, deceit, fear...many of the current feelings I have had about my condition are expressed in the characters and situations in this film. I have been reflecting on the Daniel Plainview character all day. My lymphoma is now Daniel Plainview. Overconfident, successful, mean, and now angry at my challenge to usurp his power and cast him out. Imagine, a defect in my system that allows one process, lymphatic drainage, to convince another that an internal attack is in order and that without intervention, my body would continue fighting with itself to the death. It's as if I caught my body doing something that it shouldn't and now it is embarrassed and lashing out.

A friend sent a note with some good questions that I wanted to pass along because he may not be alone in his curiosity. He experienced some awful stuff in Iraq; at least cancer is a sloth.

On the sliding scale of treatment -- meaning: no treatment, partial treatment, full treatment -- what's the prognosis and survival rate/s ? Years, months etc.
No treatment=death successful treatment=death (eventually)
No seriously, looks to be in the neighborhood of 80-90% cure...not just remission. I have to crawl through a fairly decent sized field of glass to get through this but there is an endpoint.

How much treatment do you have to endure before results are expected - and what kind of results signify success ??
If I get through the chemo and tests are still showing disease, they may change tact and head toward bone marrow techniques. It isn't currently in my marrow so this is a good prognostic indicator. They consider 5 yrs out with no bloodwork evidence, a cure. This is not to say another cancer may crop up but it won't necessarily be related. My onc thought I would see results in 2 weeks and they will take periodic CT scans along with bloodwork to see how the treatment is working. The tough part will be that getting better will be masked by the massive poisoning that occurs every 3 weeks.

Are the treatments progressively stacked or linear, meaning just one after the other.
Treatment builds on itself. Word has it that by chemo#4 or #5, energy wanes. Again, this is such an individual deal that I refuse to lay around and hope. I march on, come hell or high water.

Is there a particular cause for your condition -- or is it just plain bad luck --
Genetics, exposure to something ?? Did you eat paint chips ??
They are not able to pinpoint any real cause. Interestingly enough, I am the first person within my immediate family with any published cancer so there is no genetic predisposition. One of the early surveys I filled out was embarrassingly blank as they probed for family ties.

How long have you had it -- do you think ??
I think the October bronchitis uncovered the cancer. I asked the Onc how it would have manifested itself and his answer was, "it would be painfully obvious by now" He said I would have had chest pain, shortness of breath, other pain, etc.

I'm an open book at this point. Internet privacy be damned. If you have any questions, don't hesitate to ask. I can't think of any questions that would be too upsetting or uncomfortable to answer.
I did see the ball drop so 2009 has officially started.