It has been since May 27 that I have written to the blog. The sign of the times is such that this hiatus caused many of you to contact me wondering if things were ok and yes they are as good as can be expected. It has just been a busy time for me and the family as I will now report.
First, since my last writing I have had two more chemo sessions… May 27 and June 24 (V and VI), which means that it is almost time for another PetScan (7/15) and then another trip to Riverside (7/22) where my Dr is located. The expectation would be that another chemo session would begin at that time but that remains to be determined. My last two chemo sessions saw me not able to endure the four full days of drugs, making only three during the late May session V and only two in late June’s VI. This seems par for the course in that the progressive debilitation of the body’s physiology and fatigue becomes such that the drugs cause bigger swings in the physiology that at first. Thus at first when it took four days of treatment to knock my blood platelet number down to the critical “no more drugs point,” this happened after only two days in late June. The critical component is the platelet count (blood clotting mechanism), which becomes a factor if it drops too low. This means that the treatments are becoming progressively intolerable by me, and this can be expected to have an effect on the chemo’s effect on the rate of decline of tumor activity density (hence, less decline in the brightness of the tumors under PETscan). We will see when the Dr. looks at the PET scan and at my blood parameters.
Never a dull moment, however, in that post IV saw me and my son Jeff looking into the neuropathology of the spots on my brain. This started by seeing a neurosurgeon in San Diego who referred me to the big facility on Sunset Blvd in LA where they do microradiation surgery (i.e., finely focused beams of radiation, refer to “cyber knife” and Google that term.) So, Jeff and I headed up to Sunset for that procedure on July 5 and 6. However, that did not turn out well. While the tumors in my brain were identified and coursed since February using MRI’s taken with a 5 mm thickness resolution, the Sunset MRI took this resolution to 1 mm and this showed far many more small lesions than could be beamed out… in other words I would get an overdose of radiation if they went after all of these… and some were too small to get at all. Such is the nature of melanoma… its tumors are like dandelions in one’s yard in that they perpetually show up and can be close or well removed from the those already there…this disease just keeps giving. So, the Sunset Drs. sent me back to the San Diego facility where I am now awaiting the scheduling of a whole brain radiation. This will be next for me.
Last January when I was first diagnosed I conjured up a plan … perhaps a “last hurrah”, perhaps a “bucket project” in which I would grab my son, and his boys Tate and Nolan and my son-in-law Brian and his son Dylan and take off to see three baseball games and three stadiums in Chicago. Brian did all the planning and so we set out on June 18th for the Father’s day weekend guys traveling show. Dylan, who is 9, has a goal of seeing every major league stadium and so this would accomplish another step in that process. (On the return flight, Dylan and I took the Southwest Airlines magazine route map and marked the other trips that would be needed… about 10 to get to cities where hitting three parks would be possible…this is now taped to his bedroom wall.) Dylan can someday see them all if he plays professional baseball which is his plan. Otherwise, Brian and Wendy have their next ten vacations already mapped out.)
This trip was perfect. My friends Martin and Juliana Feder at the U. Chicago pulled a few strings and got us a cheaper hotel cost at the Omni right in the Miracle Mile. (The hotel bill listed me as J. Graham, U. Chicago and I am adding that to my CV). So we saw Wrigley field and the Cubs and Yankees on the 19th, were up in Milwaukee for the Brewers and Marlins on the 20th and back in Chicago to see the White Sox and Cubs on the 21st. I had brought three of my father’s dress shirts and wore one to each game. So in a sense he was there too (more on that below). The games were good and Dylan has told me that he has since watched games on TV from those fields and enjoyed seeing those stadiums again after being there. But our days were filled in other ways including a trip to the Navy Pier, to the top of the Hancock Bldg., to both the Field Museum and the Shedd Aquarium and Millenium Park, not to mention the hotel’s pool. Perhaps one of the most classic experiences of the trip was seeing old Wrigley Field built in about 1914. Its three or four tiers of steel plated bleachers, the bleachers across the streets were all worth seeing.. and as it was we watch the game sort of through one of the big steel pillars supporting the deck above us so for me to see the pitch I could see it leave the pitcher’s hand…. Steel… arrive at the batter. A play at first required me to lean hard to the left to see first. At my age I noted that the potties were all at street level. Once in these the boys were all taken by the men’s room urinals which were nothing more that big troughs… very uncultured relative to their world of porcelain pissers. The Milwaukee stadium’s mobile roof was impressive in that it got so cool that evening that they shut it in the 6th inning. Still, by that time I had been chilled to the bone. But that is a kid friendly stadium. The ChiSox game got a rain delay which is something S. Cal. Kids don’t see. The rain came in sheets and there was lightning and not only does the grounds crew try to cover the field asap, the fans have to leave their seats and mill around in the bowels of the stadium where there were plenty of beer vendors and hotdog stands. To add to the excitement there was a tornado warning issued that night for the Chicago area. I should mention that to both Chicago games we took the L…. the same line goes to both stadia… one to the north the other to the south.
There are many experiences that all add up to make this a perfect trip. Perhaps the best moment of the trip for me was during a wiffle ball game between the six of us that we played in the park near the big silver bean and the out door concert theater. Dylan had gotten a bat and ball souvenir and was itching for a game which we had. Bryan pitched and I was permanent outfield and the other two were the teams. The game ended after a full six innings and it was a tie, Dylan’s team came from behind just in time for the tie. Our picture post game shows the face of a young player who while covered with sweat in the noon-day heat, wanted just one more inning to win…and would not get that wish that day. It was then that Bryan made my memorable moment. He proposed “that someday these boys would bring their boys to play on this same field”... and that sort of sealed it for me.. as the trip had taken on historical status in the family.... and I here I stood thinking of this and wearing another of my father’s shirts to boot.
So that is where things are now. Even though the brain microradiation procedure being cancelled was not good news, the whole brain radiation can likely slow disease progression in that area. Perhaps too the chemo dose’s intended effects on my immune system have gotten across the blood brain barrier and had some effect on the rate of progression there. The two early MRIs (2/8 and 5/20) indicated no brain tumor progression in that time; it was the 7/5 high resolution images that change that story… and again we have no high resolution images from earlier with which to compare this. This is a lot like the problems we have in science where the data we need are just not there. Still, this is a setback in treatment and in the hopes for my long term survival. However, I feel no different than yesterday and better than last week (post chemo time is longer) and the Dr. who saw me on 7/6 expressed surprise that I appear so well. I take that as positive news that the tumors in my brain are not growing fast. But all of this is like falling into a ravine… we grab at and cling to anything that gives us hope of stopping the fall. Nevertheless, and while fearing the adverse effects of brain progression on my motor and cognitive skills, I will fight as hard as I can as long as I can as the more days I can spend with my family the better. In the hours after the cancellation my son Jeff and I talked about a lot of things. My first concern was that my beloved granddaughter Melanie was just getting into running the toy train that all of the gkids have played with at our house and that Granny did not know how to change the batteries in the motors.
Tomorrow the 9th is a lab day. I will be keen to see how things are going and will start setting up for a new project that my friend Troy will be coming out from Oklahoma to work on next week. In the meantime I have been working on two writing projects both of which should lead to publications in the next few months. We will see how this timing compares to the other time factors… and by the way my “to do projects” at home are to get a few things tidied up and to finish a portrait of Melanie… the only of my gkids for whom I have not done a painting.
Again, thanks to the loving support of my family and my many friends. jbg
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Picture of Hailey and Melanie while the boys were away. . .
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