Thursday, February 22, 2007

the last day of chemo

update from my mom

Hello friends and loved ones,

Joshua's last chemo treatment ended today at Stanford! We are rejoicing that this is the last of the eight planned chemo treatments.

But, as many of you suspected, we are now at the point where planning for possible surgery is in process. The masses residing on his liver and near the rectum are still larger than 3 cm, which is the arbitrary size for removing what we hope is only necrotic tissue from the body after chemotherapy.

The reason for removing it is that while the nonseminomatous cancer cells are probably/hopefully all dead from the chemo, the teratoma cells, which were a component of the original tumor, do not respond to chemo. So while the teratoma (if any is present in the metastases, which there is no way of knowing) may not be dangerous now, it can become so later. Thus, leaving the masses may mean leaving the teratoma a nest to grow and become a problem further down the road.

The oncologist here has requested that the liver surgeons and the medical oncology surgeons be consulted on the feasiblity of surgery, since the locations of the masses are not simple to access, and also to hopefully coordinate different surgical teams so that only one surgery is necessary, instead of going in twice.

So while we are hoping that the necrotic tissue will miraculously all melt away before the next CT scan in 4 weeks, surgery might be on the schedule, probably sometime after March 26. We are not sure whether this will be in Palo Alto, or in LA. This decision depends on what we find out about the doctors: we are looking for the best team. If any of you have first hand experience with the surgical oncology teams/systems at Stanford, UCSF, or Norris, please weigh in. (Please, no rooting for DC or Boston!)

Josh is planning a trip to Hawaii with an old friend, and his oncologists agree that it's okay for him to travel mid-March. So, he'll be leaving for a week or so around March 15 or thereabouts, for a well-deserved holiday after nearly a year of cancer mishegas. Then he'll be coming back to either LA or Stanford, or UCSF?, for the surgery, assuming it's still necessary.

We've had a steady stream of family and friends, and amazing support through all of this. I want you to know how grateful we are.

We've received so many phone calls and lovely gifts from many of you, and I start each day with the intention of calling or sending thank you notes, or arranging to have lunch, and I am feeling guilty because I just haven't had the focus to do it: to thank you personally, and to reconnect in some way that resembles our past relationships and friendships. I hope you understand and that you know that I am functioning on a rather simple level, staying away from the computer for the most part, and not talking much on the phone if I can help it.

But as you know we are far from being hermits, and so if you are inclined to stop by, just do it. We'd love to see you in person. We are MORE OFTEN THAN NOT in party central mode,--Josh is, after all, a party animal--(though he is sometimes taking a rare, and, I might venture, a rather hairless nap, and is looking handsomely snazzy as a bald guy) but generally we are all inclined to visit. And, the hot tub awaits you. So, if you are near, and healthy, come by. And if not, please get healthy: we would love to see you soon anyway.

Sunday, February 11, 2007

technical update: good news

My oncologist somehow materialized from the stratosphere bright eyed and bushy tailed, and having read the CT, told me that what we had seen was likely dead tumor mass. It apparently can take some time for dead tissue to be cleared away, even after tumor markers fall. So there is no change in the treatment plan, which means the cycle happening Feb 19-20-21 at Stanford will be (fingers crossed, holy water sprinkled, baruchas said, offerings burnt, voodoo dolls poked, vestal virgins... um...) the end of it! And the best news is that I still have an excuse to have a little pot belly, at least for now. I am also thrilled to say that my PICC line (the plastic tubing which has been sticking out of my arm for the past three and a half months) was finally removed, and I have been taking normal showers, unencumbered by plastic wrap and stress about having to keep my dressing dry. Just standing in the shower, under the running water, is an incredible pleasure. Hot tub, here I come! Despite all sorts of continuing and strange body issues caused by the chemo, I am ecstatic with each baby step back toward normalcy.

Wednesday, February 7, 2007

the roller coaster continues

I am back in LA, hooked up to four (4!) noise-making IV pumps, trying to ignore the tray of hospital food that makes me nauseous just looking at it, and pondering whether it is worth fighting with all of this tangled tubing in order to get myself into the shower.

While the tumor markers are both within the normal range, I had a CT scan on Monday evening in order to take a peek inside and see how things are going. The next day, a hapless resident, unfamiliar with my case, came into my room and announced the “good news!”: my tumor mass had reduced by more than 50%! It took a lot of self control not to punch him in the face, for this was not good news at all. In fact, it was terrible news. I had been led to believe that these last two rounds of chemo were basically overkill, in order to be absolutely sure that every last minute speck of nastiness had been killed off. I had begun to plan a vacation, and my re-entry into real life. The prospect of further rounds of chemo and surgery were extremely disturbing. I momentarily forgot, as did he, apparently, that he didn’t really know what he was talking about, and had no decision-making capability or responsibility. I freaked out for four hours, until the oncology fellow (further up the totem pole) poked his head in the room, and clarified things a bit (hah)”: Apparently all of the junk that is still apparent on the CT could be/but we don’t really know/might be/is probably just dead tumor, or scar tissue, and in any case decisions will probably/maybe be made based on tumor markers, which are low. But the real decision maker, the head oncologist, is in Paris for a conference, and doesn’t want to commit until he sees the CT for himself on Friday. No matter what the treatment plan becomes, this has all been unnecessary, as far as I am concerned. I understand the desire to keep a pesky patient/medical student informed about the latest results, but there also needs to be an awareness that information without context can be damaging. It was a reminder that the information contained in a patient’s chart is more than a series of chronologically organized data; these cold figures in fact represent real life dilemmas for a real person, and that the doctor must take into account the patient’s prior experience and expectations before waltzing in and dropping bombs.

This latest vague and difficult news does not lend itself to planning and prognostication. At this point, I am attempting to remain calm while waiting for more information, and trying to remain focused on the outcome that I want: to be done with this current ordeal in three weeks, and to get back to my life.

I will be out of the hospital come Thursday afternoon, with no cisplatin and amifostine to weigh down my exit. Hopefully this means a quicker and less miserable recovery. If it looks like I will be able to care for myself, I am tempted to send my mother back on up to Palo Alto and remain here in LA for the week, to re-inhabit my apartment and my life, to begin to stake some claim on being an independent 27 year old again.