Wednesday, September 17, 2014

Seasonal changes

My habit every morning for the last month has been to prepare bag lunches for the ladies of my house and then make myself a half cup of black coffee with a tiny sprinkle of sugar and head out to feed the fish in the pond.  I sip coffee and stand motionless waiting for the goldfish to notice the food scattered on the surface and come up from their hiding places in the murky water beneath the lily pads to snatch the tidbits.  It usually takes a couple of minutes before I see the first one break the surface and then disappear again.  By the time my coffee is gone, I typically see evidence of one to four lively fishies.  But this past week there has been no activity whatsoever.  I'm not sure if it is the seasonal cold that keeps them in hiding or whether perhaps raccoons have been using the pond as a place to hunt for food.  There is some evidence of four-legged disturbance: floating plants chewed up and dragged on shore and the pot that holds the lily pads in the middle of the pond was knocked over on its side. But I'm still holding out hope for the fish that their cold-blooded bodies are content to process summer feeding in the deepest part of the pond.  An air bubbler will ensure that ice will not cover the entire pond and that I'll discover an active bunch in the spring.  Still I would like to see some evidence that a daily feeding is still required.  I like the ritual and will try to maintain it as long as weather permits.

Another ritual that seems to have morphed is my chemo schedule.  I still come in every two weeks for an infusion but it is now standard that my platelet count is too low for treatment and it is bumped a week.  After the third week it is still low but evidently close enough to the borderline to move forward.  So this drags out the total course of 12 infusions.  I only have two left of the twelve but that will likely take 6 weeks to get through.  I'm confident that it is working and am grateful to have medicine that does what it is supposed to do.  It will be nice to have it be over.  But who knows what will be on the other side?  I have not yet seen my doctor a second time to ask these questions.

In the meantime, September an October will include some travel.  I plan on visiting my daughters in their respective cities.  I will be driving to Ithaca, New York at the end of September for Abby's 21st birthday and Mary and I will fly out to Los Angeles to visit Alice the second week of October. Towards the end of that month we will be heading to Chicago for the wedding of Mary's brother, Guy to his partner, Rich.

We had mentioned to Marlee that after she got a job we would help her get a car.  So now she works for SaladWorks downtown and drives there in a 2003 Ford Focus.  It was a Craig's List gamble and so far it was a bad gamble. We've had to put in over $1000 in repairs and there could be more to come.  I'm reminded of the burden of ownership on a kid (not to mention the parents) and also the sense of freedom that comes with having  car that you do not have to share with anyone.  It is a new era.

I welcome the cooler days and I know the bone-chilling days are soon to follow.  Before you know it, it will be excitement of spring, with the promise of new green and  days of short-sleeved shirts and bare feet.

Friday, August 22, 2014

Kenneth Krajewski & cuisine

Some info about my new, very tall doctor, .  Here is a  2-minute video interview.  I'll have to let the Lacks Center know that they should get me to do their video interviews in the future.  This one is kind of lame.  Seriously, they put him right in front of a window and asked kinda routine, uninspired questions. I do like the fact that he specifically mentions new innovations in my specific cancer.  I'll have my first appointment with him on Tuesday.  Looking forward to it except for the fact that I'll have to come home from my week at Glen Lake after only 3 days.  If my platelet count is high enough I'll get chemo right after the appointment and since I'll have the pump, I'll likely stay in Grand Rapids for the duration.

I also want to report that the smuggled frozen meats from Rob & Joanne's farm have been converted to roast chicken and oxtail stew.  Both delicious!!  My only August regret is that my stomach size is only good for one ear of sweetcorn per meal.  In my mind I could do about 3 or 4 ears.  On the plus side, tomatoes at every meal.

Rosemary-encrusted, organic chicken with caprese salad (featuring my garden tomatoes and basil) and roasted potatoes
Oxtail stew rendered from from a grass-fed, Vashon Island ox's southern end

Tuesday, August 12, 2014

See! It is August already!

I just got back from 8 days in the Pacific Northwest where I had the opportunity to canoe, camp, and participate in family and Farm life with my brother Rob, and his family (Joanne, Mira and Rose).  I also squeezed in visits with long-time friends- from high school, Steve Klamer and from college, David Suwal and his wife Katie.  We had incredibly beautiful weather: sunny and no rain every day.

I was a  bit nervous about the physical challenge of keeping up when it came to hiking and canoeing but I am pleased to say I managed OK being "off the grid" and eating dry and non-refrigerated foods for 4 days.  It'll drive you a little nuts when you are eating mostly nuts and dried fruit for many meals.  But the scenery of North Cascades National Park made you quickly forget creature comforts.  Very few bugs and lovely, well-maintained campsites made the experience even easier to handle.  After each day of canoeing, my sweet nieces set up the one-man tent for me without prompting. Early bedtimes in wonderful climate left time for napping and reading and listening to wildlife.

 Back on the farm, we had the pleasure of a peach tree in its prime with perfect peaches any time we wanted and we wanted a lot.  There is nothing worse than a disappointing peach and nothing better than a perfect peach.  We also picked blueberries and Rob made a couple of blueberry pies which we augmented with just a taste of Häagen Dazs Vanilla Bean ice cream.  All an important part of a good breakfast.  On Saturday, I also accompanied Rob to the Vashon Island Farmers' Market and helped him sell his veggies at their booth.

The Chicken is still cold in GR
The flights were all smooth and easy with on-time curbside pick-ups from my friends.  The only glitch was that I took off my wristwatch and put it in the x-ray bin before subjecting my self to the metal detector and I somehow neglected to grab it on the other side.  Rob sent a farm-raised, organic frozen chicken and an oxtail home with me.  I packed them wrapped in plastic, stuffed into a pair of jeans and buried deep in my sleeping bag.  I was happy to find them still cold and unmolested by TSA.

Still it is good to be back in Grand Rapids in my own bed with my loving homies, cooking in my own kitchen and tending my own tomato plants and goldfish livestock.  Our awesome new neighbors, the Verkaiks, kept the plants watered during a very dry Grand Rapids week and I was rewarded with the first batch of ripe tomatoes.  A little fresh sweetcorn and I am in heaven!

Busting my bubble was a scheduled chemo this morning.  I had had an extra week off and had kind of forgotten about the whole cancer treatment thing.  My blood test still reflected low platelet counts so they ratcheted down my chemo concentration rather than bump me another week.  I've got all kinds of pretty purple bruises to back up that diagnosis.

Dr. Scott can stop working for a moment
It also happened to be Dr. Scott's last day before retirement.  It felt odd to have him be suddenly just gone after 2 and a half years of life-extending treatments.  It is kind of an intimate relationship to jut disappear without a goodbye.  I expressed this to Linda, my chemo Nurse and she said she would inquire whether he could squeeze in a quick farewell.  The man is so busy, he really does need to retire and his bedside manner has always been a bit awkward.  But he did manage to stop in the chemo lounge and introduce me to my new Hematologist, Kenneth Krajewski. He's younger and even taller than the very tall Dr. Scott. Gonna have to work on pronouncing his name.  Dr. Scott was in such a hurry that there was barely time for a satisfying goodbye.  I owe his work for keeping me in the top 6 percent of survivors for my type and stage of cancer. I guess  I have to write a letter.  I had to grab him by the coattails to pull him back for a quick photo (photo credit, Dr. Ken Krajewski).

Brothers reunite
Gonna go pick some more tomatoes and try for a goldfish sighting.  This will be a week for resting up.

Wednesday, July 23, 2014

Apparent progress

Preferring to goldfish pond or CT scans?  Well, both really. 

The pond seems to be supporting at least some fish for a reasonable amount of time.  I added ten more a while back and I have only pulled out two dead ones.  There are about 5, distinctive fish that I can tell are getting larger and they regularly play in the bubbler, darting in and out of the bubbles seeming to be having fun.  Algae is now growing and I decided to let it grow because I think plant life is healthy for the environment.  It is harder to see the fish anywhere but in the froth of the bubbler.

I had a CT scan last week Monday.  It was supposed to be the Friday before but I forgot to take one of my pre-meds for allergy to dye contrast and I made the mistake of telling them that.  They rescheduled the procedure but not before I had drunken a bottle of barium and taken a heavy dose of Benedryl that made me foggy for the rest of the day.  But Monday scans went easy and yesterday I got the result: Stable.  No change in size, most importantly, no growth.  The blood tests that accompanied the scan showed the "tumor marker" figures still dropping.  That is very good news.  The liver tumors are producing less and less of the growth pattern that activates the marker.  This is not a surprise to me because I feel a healing in my gut.

I'm back on chemo this week but I'll have an extra week off because I will be heading to Seattle August 2-10.  One more dose at least as soon as I get back.

Friday, June 13, 2014

Speeding summer blues

It's June.  One of the things I hate about June is that it is suddenly July and summer is half over.  I still need to exchange all the long sleeve flannel shirts in my closet for the short sleeve madras shirts hanging in the transitional closet in the basement. Oh, to be able to slow down time and savor the warm months!

I guess I should be leading with the boring, predicable results of the transesophageal echocardiogram (TEE) .  They were negative as expected.  My heart is in good shape and not the source of any stroke.  It was a relatively short and easy procedure.  Mary accompanied me.   I was given Versed, the drug that makes you sleep, or at least forget everything that happened while you were quasi-awake.  I was really a little afraid because I was told I would need to be awake enough to swallow an ultrasound probe.  I remember getting the spray that anesthetizes the throat but the rest, fortunately, is a blank.  They decided to use a pediatric probe because of my messed-up esophageal anatomy and the possibility of some narrow passages.

With WMCAT over and my summer threatening to turn into autumn, I jumped into a couple of seasonal home projects.  Number one was getting the pool open.  That was easily accomplished by hiring a teenager to mop out the winter detritus and a pro to get all the mechanics going with all the proper maintenance tweaks that I otherwise might overlook. It always feels good to have a bubbling pool with clear water instead of a gaping hole littered with 8 months worth of tree debris. The second project was to finally convert that concrete, kidney-shaped, cracked wreck of a potential pond into a similar but functional pond that holds water, goldfish and maybe a turtle or two.  I had attempted this a couple times before in previous using self conceived methods for patching cracks that seemed to make sense to a person who knows nothing about these sorts of things.  This time, after powerwashing I invested in the over-priced pond-certified products that guarantee success; primarily, three coats of fish-safe, rubberized paint.  It looked fantastic!  But would it hold water?  I could barely stand to wait the prescribed curing period.

The good news is that it holds water.  The bad news is that it kills goldfish in relatively short order.  I first tried three grocery store "feeder" goldfish.  They cost 28 cents each but still they represented a life in my hands.  They seemed so happy, exploring every inch of the pond, separating and regrouping in a  mini-school.  I watched them for a couple hours.  After several hours break, I came back to find them all belly up.  It was devastating!  I talked to a friend who has worked in a pet store for 15 years and she offered to test the water.  I brought in a sample and it passed all the tests with flying colors.  We speculated that I might have gotten sick fish or maybe the city water was too fresh and full of chlorine, that now had clearly evaporated.  She picked out 4, extra-healthy-looking and pretty "feeder" goldfish that I would be rescuing from a fate of being fed to pet piranhas. At the same time, Marlee brought home from school two large goldfish from her teacher's pond.  They already had names so there was a bit of extra pressure there to succeed.  This time, I followed a temperature adjusting procedure of floating the bags of water in the pond for 20 minutes.  Once again, it was a joy to see them go from their claustrophobic little containers to the sprawling Ponderosa in my back yard.  My friend Dave Hast was with me to witness.  Four hours later, the little goldfish were dead.  One more hour and the big ones were lying upside-down on the bottom.  All I can figure is that the slotted concrete blocks i had placed in the bottom for raccoon shelter had been impregnated with some kind of poison during their  tenure as lawn tripping hazards.  So my plan is to pump out the water, remove the bricks, rinse out the pond, refill it, add some water plants and try again.  Any fish lovers want to try and stop me?

I also accomplished my goal of getting my 83-year-old dad back on motorized wheels.  We delivered a 50cc scooter to him and after a brief practice ride,  followed him in a car to his local haunts.  It felt like a success.  His balance is still great and he can't get into too much trouble at a maximum of 25mph.

Chemo continues to be a drag on my energy levels but I am grateful that the side effects are minimal. Blood platelet levels continue to drop but not to serious levels yet.  One side-effect of that is that I am subject to bleeding and bruising.  I have some pretty sweet bruises commensurate with my klutziness.  I also have about 8 days where ice-cold food and beverages are somewhat uncomfortable.  I'm seeking out as much cold beer or ice cream as possible for the remaining days before the next infusion.  The nausea is only slight and I still have my glorious locks of hair and robust appetite.

Tuesday, May 27, 2014

Summer vacation

Dr. Scott led with the good news at this morning's appointment:
"It's working!"
The chemotherapy is effective according to the results of last Friday's CT scan.  All the liver tumors are shrinking. But at the same time the toxicity is high and he had to cancel this morning's infusion because my blood platelet count was too low to treat me.  So I get another week off chemo.  It may mean that I am now one week on and two weeks off.  I guess I'll take that even though I am anxious for the drugs to do their work.

Still one more hospital test next Monday; a trans-esophageal something or other.  They will induce sleep and put some scanner down my throat to look at my heart to make sure that the source of my stroke is not originating there.  This was ordered by the Neurologist, Dr. Santos.  Dr. Scott suspects the stroke was triggered by migraines. But the heart must be ruled out.

My classes at WMCAT ended last week and I have to say that it felt just like that old feeling from grade school at the beginning of summer vacation. But it was bittersweet saying goodbye to the kids.

Time to work a little travel into my schedule.

Monday, May 19, 2014


It was a weird week last week.  I was having visual problems and lightheadedness that I chalked up to migraines.  That may still be the source of the visual symptoms but the problems led to an MRI on Friday and I just got a phone call telling me I had a stroke.  Must be a very small one because I don't seem to have stroke symptoms but it means getting back on a daily aspirin regimen.

When I had my appointment with Dr. Santos, the Neurologist/ Ophthalmologist, to see why large fields of vision were disappearing, he ran a battery of tests that indicated the possibility of something in the brain.  The fear was that it would be a brain tumor from metastasized cancer.  There was an unexplained spot on my retina and a visual field test that hinted something was not right.  He ordered the MRI, this time at the Lemmen Holton Cancer Center (part of Spectrum Health) so I was able to do some comparison shopping.  Their MRI machine seemed smaller and less frightening and they didn't offer music (a ridiculous salve for the loud MRI noises) and they did offer a cool blindfold and an array of snacks at the end.  I think points go to Lemmen Holton.  A "wet read" was ordered, which meant my Dr. would get results within the hour.

Somehow, Dr. Santos was unreachable and I waited all evening for the call.  Finally at 10:30pm the phone rang it was Dr. Mohr, a partner of my primary care physician, Dr. Hazle. When they couldn't reach Dr. Santos, they bumped down to the next guy on the list and since Dr. Hazle was not the guy on call, it was bumped again to Dr. Mohr, who I guess I would say I like based on our conversation.  He did not blurt out the results.  He said he did not know me and wanted first for me to set up the story as to why I was having an MRI.  After hearing my story he said, "Well I guess this is good news".  No tumor.  The bad news being that I'd had a stroke.  The further good news being that I did not have any horrible stroke symptoms or evidence of permanent damage.

A bunch of new tests have been added to this Friday's CT scan looking for the source of the clot. The doctors say I am too young to be having a stroke and it is undoubtedly related to cancer.  I still feel light headed but am somewhat relieved that this is my last week of classes.