Encouraging News

Happy New Year! 

Today – to the sounds of a famous Mozart piece – I had my follow-up CT and PET scans to track the effect of the treatment thus far.   It is not unusual for the treatment to take up to six months to eradicate the errant tissue.   So this is generally a first look to see some initial movement in a positive direction.

While the medical staff at Tower Oncology is still prompt, courteous, and top-notch in all ways one might judge a medical facility, the process of these scans is not pleasant. Having ceased exercise for 48 hours, given up carbs & sugar for 24 hours, and fasted since breakfast, I was in a restless mood already when they handed me the first of my Grande, berry-flavored barium shakes. Three different people asked me what flavor I wanted from a choice of banana, orange, mint, berry, and mochaccino. Honestly, I can’t imagine it makes a difference. The stuff is ghastly.

As I finished downing my first liter, they shot me up with the radioactive dye and deposited my radiant self in a private waiting room to complete downing a second liter of barium. Then, filled with radioactive iodine, I was directed into the scan room and left to lay still for the 40-minute scan process. I was woozy, bloated, and irritable as I left the facility to join Debby for the special weekday treat of lunch and a movie.  Some decent food lifted my mood. As before, I was deemed still too radioactive to be around small children for about six hours.

I have an appointment with the oncologist next week, but in the middle of the movie he called to give me some preliminary results. While some blood tests have not yet come back and more study of some results is warranted, the CAT scan, which shows anatomy, came back completely negative. This is good news, and not entirely surprising as the CAT scan I had right before starting radiation treatment was also negative.

The PET scan was negative in the area of my stomach as well as in the lower intestine area that previously had lit up with mysterious “activity.” More good news. The doctor would not say that the MALT is already completely gone as biopsies are necessary to confirm this, but it is certainly encouraging. The PET scan did, however, light up in a new area in my lower bowel. This could mean there is cancerous activity; it could mean I have some minor inflammation or infection, or it could have another explanation. It is not conclusive, and, at least at this time, not of terrible concern to the oncologist. He will wait for all the data to come in and to consult with my gastro dr. I think it’s likely I have a colonoscopy in my future. That fancy double-balloon procedure is not indicated at this time.

Through this process I have been a believer in pursuing and receiving all forms of healing. Whether there is quantitative proof of value or not, I can say that all the energy, prayers, and generosity of friends, have lifted my spirits. If you are open to the possibility that there is power in “spirits” in either physical or psychological ways, then these efforts have been extremely powerful for me. I am living on a loving plane of gratitude for all that I have received. Thank you all. May I be a river to pass on this bounty of healing energy to all of you.

More news soon . . .

Treatment and Beyond

(Watching football with Hannah Mathilda)

So I finished radiation treatment a week and half ago.   Other than the inconvenience of going to the facility every weekday for four weeks – about a half-hour each time + twenty minutes travel, the impact of the treatment period was pretty tolerable.  I continued eating well and actually joined a gym to pump up my strength.  I enjoyed a second and very powerful healing ceremony offered by members of our synagogue.  I think it all helps, and I value greatly all the prayers, books, meals, and good wishes that friends offer on my behalf.

Toward the end of the treatment period, the cumulative effects of the radiation did start to take their toll in the form of a pointed kind of fatigue that would hit me in the afternoons.   So I took naps, and that really balanced it out.  Finally, over the last couple days, I am feeling my energy return.

And so, moving on . . . I have a check-up after Thanksgiving at which time we will schedule that follow-up PET/CT scan.   They don’t expect to see much change in my stomach yet.  The effects of the radiation won’t be fully apparent for six months.  However, it will be telling to see if the activity in my lower intestine reappears.  If nothing shows up there – as we all expect – then I’m mostly in the clear for the time being.  My radiologist suggested that, if the scan is negative now, when I do have the endoscopy at the six-month interval, I actually should have the double-balloon endoscopy procedure just to be sure about what initially showed up in the first scan.   Here is an interesting animation showing how this new technology operates (I only get a little cramped watching this): DBE Animation

We’ll be up the Bay Area over Thanksgiving, and I look forward to reconnecting in person with family and friends up there.  I’m keenly attuned to the theme of gratitude as we enter this holiday season.   I’ve received so much good energy, and I send along the bounty to all of you.

Plodding Along

Well, 14 down, 6 more to go.    I’m most of the way through my radiation treatment, and it has been largely uneventful.  I’m very thankful.  The radiology office continues to be so prompt and courteous that, while I may enter with some trepidation, I always leave with a positive spring in my step.  And my check-up with the oncologist was similarly brief and encouraging.   The photos are of the nursing staff on Halloween afternoon.

They say that, if I am to feel any effects from the radiation, it will be from the cumulative impact; so it is likely that in the last week and the weeks following treatment that I may feel some queasiness or fatigue.   I already have made a point to add a rest period to my days, and I think I am now just starting to feel the “phasers-on-stun” effect of the treatment.   My appetite is still good, and I have had no skin irritation at all.  In the afternoons I am just feeling a little tired.

Of course, the whole issue of the “activity” in my lower intestine is the quiet elephant in the room.   It may be that follow-up tests show it to be nothing.   It may be that those tests trigger more involved treatment – or I may still need that double-balloon endoscopy.  We won't know for several weeks.  I think I’m going to get on the waiting list for that procedure just in case.

And it wouldn’t be medical journey without at least a little drama; so here is the latest installment:  At the beginning of this whole episode we decided that I should get a second opinion – just to be safe.  Since my doctor is already an eminent specialist, we thought it only makes sense to get a second opinion from another “MDeity.”   That search led us locally to the head doctor at the City of Hope cancer center in Duarte.  

It took a while to get files from all the various doctors and labs sent to City of Hope.  One lab said they had to prepare new pathology slides and that it would take a few days.   It took them only two days – except they never called me to say the slides were ready.   So that delayed things another week.   To expedite the paperwork, I drove over to the lab and hand-carried the slides out to Duarte.

Meanwhile, City of Hope told me that I simply couldn’t see the doctor I wanted.  Luckily, both my oncologist and my radiologist know the doc at City of Hope.   My oncologist thought it would be a good idea for me to see him, and he called and spoke to the guy personally on my behalf.   I was told to await a scheduling call.   After some phone tag, however, I was notified that this guy still wouldn’t see me – and that the specialist he referred me to is on vacation for a month.   And now my oncologist was out of town on a convention.  So . . . do I try to chase down this doctor who twice has refused to see me?  Do I settle for a second opinion from a competent but un- “deified” specialist?  My oncologist’s office says they are going to chase down the reason for the refusal and find me a solution.

So I continue (mostly) with my diet, save for a detour to a fabulous steakhouse and falling off the wagon at a kids’ birthday party where I stuffed myself with bagels & pizza.  I’m definitely going to need some new pants at a svelter size. 

(Me with Hannah Mathilda (3) and Emmett (5) in the background)

The intuitive healer suggested I get checked for parasites and microbes, but that all turned out negative.  I’m buoyed by so many peoples prayers, meals, good wishes, and other healing efforts.   I appreciate it all.  Tonight I’m off to another wonderful healing ceremony which I hope will keep the good momentum going.

Radiant

As the sounds of The Rolling Stones’ Let It Bleed warbled from the sound system, I underwent my first session of radiation treatment Thursday.  It was blessedly uneventful.

We arrived early and a little anxious.  The radiology office truly put us at ease, addressing me by name with a smile as I entered the building.  Pretty much right on time, a technician ushered us back to one of their two radiation rooms.  We grabbed a couple quick snaps of the enormous machine in the center; I doffed my shirt and then took my position laying on the tray.  Turns out I am not laying in a cast but just on this tray with handles, exactly like the tray used for the previous week’s CT scan – so I assume the exact same position.  The technicians then aligned my body with positioning lasers aimed at the tattoo dots I received last week.  Then everyone left the room.

“Well, we all need someone we can lean on . . .” sang Mick Jagger as the giant machine came to life.  The tray raised me up and a little closer to the machine’s axis, while two x-ray wings on the sides folded inwards toward me.   The whole machine then slowly orbited around me a couple times.   They were doing a couple x-ray scans to make sure I was aligned precisely right.  Then  . . I . . waited on the slab, er, “tray” while they retrieved the radiologist to the control room to approve my positioning.  Finally ready, they commenced.  The x-ray wings folded back, and the machine gave out a loud, vibrating hum.   The irradiating head made two orbits around me of about 40 seconds each.   I may have felt a small amount of heat, and I strained my eyes to see the fan blades inside the machine adjusting slightly as it turned by my front.   The hum stopped, and the machine started to reset.   That was it.    1 down, 19 more to go.

In the afternoon I had my second session of energy balancing and therapeutic massage.  It’s a little bit of counseling with an alternative bent before the bodywork begins, and it was a terrific antidote to the stress of the morning.   In the late afternoon I was tired, but it could have been from the massage, stress, or my daughter waking us up early – as much as it might have been from the treatment.  I took a rest, and by the evening I actually felt more energized than ever.   I may eventually develop fatigue from the cumulative treatment.  We’ll see.

Today’s session was much the same, although the music was some generic Sinatra knock-off I didn’t recognize.   Debra tells me it’s Michael Bublé.  (I’m out of the pop loop.)  It was followed by a quick check-up with the radiologist.   We reviewed that I will be receiving 20 sessions of 150 centigrade radiation for a cumulative dose of 3000 centigrade.  (I may not have the unit name exactly right.)   The radiation damages the DNA of the tumor cells.  When the cells grow and divide, they die.   Thus, the eradication is not instantaneous but only occurs as the tumor cells attempt to develop.   So I’ll have that follow-up PET scan in 8-10 weeks to check on progress, and then I’ll wait the 6 months before having an endoscopy to confirm that all the tumor cells are eradicated.   The radiation does affect some healthy cells in the area of the tumor, but healthy cell tissue is able to repair itself more quickly, within a few weeks.  

Interestingly, this radiation is an “oxidizing” process; so taking massive doses of healthful anti-oxidants would work against the treatment.  The radiologist did say I can eat my vegetables, but he warned against doing any unusual treatments while undergoing the radiation.   I meet with a nutritionist from his office next Tuesday, but I think I’ll put on hold the super-alkalized water I was going to place into my diet.

He also suggested that we now wait a few weeks before soliciting the second opinion.  City of Hope had “triaged” me to more junior physician, noting that the head doctor we wanted was unavailable.  My radiologist said he knows the top guy and will get me in at the proper time.  I’m still waiting for UCLA to prepare the biopsy slides I ordered last week anyway.  

And I’m feeling good, looking toward my last session on November 11.   Maybe we’ll have a party.

Carousel

And around we go again. It’s been an eventful week. Don’t get dizzy now . . .

I had been trying to find a doctor who could do the double balloon procedure sooner. We also have been researching where to go for an expert second opinion, and City of Hope cancer center in nearby Duarte seems to be a good place to explore. So on Monday I finally got a call back from the guy at UCLA who did my endoscopic ultrasound. He’d been out of town. Turns out he doesn’t do the DBE but gave me the name of a colleague he recommends. I left a message. And my internist let me know that he had sent a letter defending the (failed and now un-needed) capsule cam study. Okay.

On Tuesday I heard that the past Friday’s CT enteroscopy – to assess how to proceed with the DBE - was completely negative, no activity visible, which is good –very good, in fact. However, the capsule cam doc who ordered the procedure was now stumped. (Debra has a non-medical theory that accounts for the data: Perhaps there was cancer in my bowel, but all the prayers healed it.) While the gastro doctor explained that this particular scan was more accurate in the bowel than the PET scan had been, he was still concerned that I had originally had a positive result. He consulted with my other gastro doctor and recommended I still have the DBE to know absolutely for certain that that there was no lymphoma activity. In fact, he had met with the “pros from Dover” at Cedars about my case. Tuesday, I also heard that the insurance company has now approved my capsule cam study. At least we’ll see a few bucks back from that fiasco.

With the good news from the CT scan, I contacted the oncologist for his take. I was getting very impatient with the gastroenterologists. The oncologist repeated that he didn’t think the PET reading of my bowel was likely to be significant, and he didn’t want to wait a month or more to investigate this issue. He would rather under-medicate than over-medicate. He recommended I immediately get back into the original schedule of radiation for my stomach – with no other meds. He plans a follow-up PET scan in a few weeks anyway, and if the lower intestine activity were to reappear, we’d deal with it then. I called to leave word with the radiologist.

No sooner had I hung up the phone than the assistant to the Double Balloon guy at Cedars called to give me a procedure date in two weeks. I responded very graciously, thankful for the consideration to jump the line – but told her now I didn’t need the procedure, at least not right away. She was surprised, the implication being that the capsule cam doctor had really thrown his weight into getting me a priority spot. I thanked her again and fielded a call from the radiologist, scheduling their CT scan for – my regular scanning day – Friday. And then I got another call from the DBE guy at Cedars, asking for my oncologist's number. I was happy they were going to talk - and leave me out of it.

In the midst of this, I was scheduling a weekend getaway for me and Debra – no kids. This outing had been on the calendar since before my diagnosis as it marked the end of the Jewish High Holiday season, and I had known months before that Debra would need a break. But events had prevented actually booking a trip. No turning back, I thought; I booked us a cruise to Mexico leaving Friday afternoon. So with the radiologist I was eager to have his scan done Friday morning and know they were working up the protocol to start my four weeks of radiation as soon as possible.

Then I heard from this new guy at UCLA. He only does a Single Balloon Endoscopy (??) but would be happy to see me for a consult . . . I don’t think so. And then we got word that City of Hope also does not do this very new procedure. Okay, fine. They did give me specific instructions on how they need materials delivered to do a second opinion. So we could now get that ball rolling. And Thursday evening I finally heard from my internist, who also had been out of town. In his usual thoughtful manner, he responded to my questions and laid out for me the details of what had been going on in more clarity and specificity than any of the “specialists.” I was calming down.

This week also included acupuncture – and the discovery that the acupuncture place had given me an "invalid" diagnostic code for the insurance. So, while my insurance is supposed to cover a nominal portion of the treatment, I now have to deal with diagnostic codes to satisfy them. The effort may be counteracting the benefits.

Also, Rabbi Zalman Schachter-Shalomi, the founder of the Jewish Renewal movement and a colleague of my wife, referred me to an intuitive healer and graciously paid for my first session. It was by phone, and this healer had some terrific observations and sound practical advice. She also offered a number of intuited suggestions and did some distance healing work. I'm putting some of her thoughts to the test. Along with the intuitive healer, there is a nurse in our congregation who does energy work and therapeutic massage. She generously has offered her services to me. We had our first session, which I found very calming. As I said to her in our session: “I’m greedy. I’ll take healing from all the sources I can."

Friday’s CT scan was much less complicated and uncomfortable. I was in and out of the radiologist’s building in 40 minutes, not even having had to fast. I was told my 20 days of radiation would begin Thursday. I filled the couple hours left pre-cruise coordinating the records from all the doctors to go to City of Hope. And then we were off.

The cruise was wonderful, very relaxing and fun, although it’s fair to say I fell off my diet for a couple days. The only bummer was that we had scheduled a couple’s full-body detox seaweed wrap and massage, but, after noting that I had radiation treatment coming up, they refused to touch me as a matter of company policy. I guess you can only get detoxed on a Carnival ship if you’re healthy.

All in all, it was a needed escape from the full-time whirlwind week of medical opinions, scans, and recommendations. I haven’t even included all the events here. I do feel that we are now back on track with a coherent plan that I understand. And I’ll be done with treatment in time to get out of town for Thanksgiving with my extended family. Thanks to you all. Here we go . . .

False Start

I was eager to meet with the radiation doc last Wednesday. It felt like this was the point where “the rubber meets the road” in terms of real treatment. Much like my oncologist’s office, the radiation doc’s office is extremely well run with kind, understanding, and prompt staff, led by the example of the physician. He anticipated nearly all our questions and set us at ease for the processes to come. Given the negative results of all my tests thus far, he felt that the retuxan medicine will not be needed and that I will go on a 4-week course of radiation, 5 days a week. The dosing, as I had been told earlier, is relatively low, and my side effects are expected to be minimal – with little nausea or lack of energy. When I have the radiation treatments, I will lay in a sort of cast so that the beam can aim very accurately each time. And I’ll get a couple little dot tatooes to help them set it up each day.

After the 4 weeks of treatment, we then wait another 5 months before doing an endoscopy to confirm success. This errant tissue continues to shrink after the radiation, and doing the endoscopy sooner would not yield accurate results. So there will be more waiting, and I’ll have a chance to continue my ultra-health, macrobiotic, phytonutrient diet. I came away from the appointment energized and ready to go.

But, as I said last week, they didn’t have “all the results,” and they still don’t. In fact, it’s now becoming a much more protracted process to confirm what the PET scan indicated might be going on in my lower intestine. The capsule cam doctor called to tell me “good news” that the test was effectively negative but that it was a “sub-optimal” study, which he had to explain to me. It seems the capsule cam’s journey did not go as planned. The little camera carries an 8-hour battery, taking two pictures a second as it tries to wend its way gradually through my entire digestive system. In my case, though, the camera spent 7 ½ hours in my stomach before starting into my intestine, where the battery died before getting to the area they hoped to examine. The doctor was quick to tell me that “this almost never happens.”

So . . . the gastroenterologists talked and came up with a couple options: One would be to repeat the capsule cam study but to launch the camera endoscopically, placing it just beyond my stomach. The other option would be to do a more elaborate and invasive new procedure called a double-balloon endoscopy which would send a specialized, extra long endoscope into my intestine, using a pair of expanding balloons to help the scope creep through my bowel. He was opting for the former procedure. One problem, however, was that my insurance had denied the capsule cam study the first time as “investigative,” and they needed to be convinced that the study was valid both the first time as well as in the proposed, more involved, follow up version. I began marshalling all my doctors to write the insurance company and weigh in on the need for these capsule cam studies.

Then, as the letters were going out, the capsule cam doc called me again to say he realized that, even if the capsule cam study had worked and shown a negative result, that it wouldn’t be conclusive. A positive finding would have shown exactly where to focus further attention, but a negative result would seem to him inadequate. So now - forget the second capsule cam study and let’s do that "very effective" double-balloon procedure that the day before seemed needlessly risky. Are you still with me? - because my head was starting to spin. Cedars-Sinai has two very experienced specialists in this procedure who, guess what, are the same two guys that do that endoscopic ultrasound and are still booked several months in advance. However, I might get to jump the line a little. We’ll see.

The other issue is that it isn’t clear enough from the PET scan whether this procedure should enter me from the top or the bottom. To get that information, there are two possibilities: One of them is – can you guess? – a capsule cam study launched from beyond my stomach. The other is a specialized CAT scan enteroscopy. Since the radiation doc wanted to do a CAT scan, I asked him if we could accomplish both procedures with the same scan. Alas (of course), no, these are two different kinds of looks at the same thing. (I’m still not so sure.) Meanwhile, the radiation doc wants to put everything on hold pending resolution of the lower intestine issue, and I got a nice phone message from the oncologist that he had sent that letter to the insurance company about how valuable the capsule cam study is . . .

Yesterday, I had the CAT scan enteroscopy, which, save for the moments of acute pain during the bone marrow biopsy (my hip bone is still a little sore), was one of the least comfortable procedures I’ve had. While they didn’t use any radioactive materials, they still filled me with barium smoothies. Then they gave me drugs to bloat my system and charge it with digestive activity. At the same time they gave me a medication to shut down my bowel activity for an hour. So you really have to go, but you physically can’t. Then they added IV iodine for that nice warm feeling I didn't invite. The scan itself was relatively easy, but I have been gassy, bloated, and queasy for the last 18 hours.

Meanwhile, we are inquiring into other local doctors with a specialty in double-balloon endoscopy and an earlier availability. And all of this is to confirm something that most of the doctors think will be negative and insignificant. Everyone wants to be careful, which is nice. I’m just constantly reminded of my wife’s wonderful Yom Kippur sermon admonishing me to use my waiting time in a positive way. Maybe I’ll take up boxing.

Some news

A friend of ours who has survived her own health challenges told me that the hardest part of the process – harder than any of the actual treatments or procedures – was the waiting and the anticipation. I’m beginning to understand very clearly.

After a week of healing from a virus, getting a bone marrow biopsy (a doctor jabbing a large needle into my ass and hip bone), and swallowing some of the newest technology from Israel – a capsule-camera about the size of a large vitamin tablet, I finally got to meet again with the oncologist today for “all the results.”

Of course, he doesn’t have all the results. We’re still waiting for some specific tests on the bone marrow and on the biopsies from the endoscopy. And the capsule-cam results aren’t in yet. But we do know a few things:

Bone marrow tests so far are negative (that's a good thing), and the doctor expects the more specialized tests also will be negative. We’ll see. From the endoscopy we know that the mass is pretty much where they expected it to be. However, some lymphoma cells are present in other places in my stomach. While a bit surprising, this apparently is not unusual and does not change the treatment strategy, primarily: radiation.

Assuming the rest of the test results are consistent, the strategy remains 3 -6 weeks of daily radiation treatments. The dose of radiation they use for this type of thing is usually half of what is used for other sorts of tumors and lymphomas. So side effects should be less. If the tests show any additional significant activity, I will go on a medication called Retuxan. This is not a chemotherapy drug but a specialized protein treatment that has been around for 17 years. So side effects again are supposed to be minimal. It is administered with weekly infusions at the doctor’s office. If the capsule-cam finds more stuff in my intestine, I will have additional radiation in that area, and there may be a further medication plan depending on the specifics of what they find.

Next up, I meet with the radiation doctor on Wednesday. I’ve been handed off, and I won’t see the oncologist again for another month. It apparently takes the radiation docs several days to devise my specific treatment plan. So “all the results” should be in by the end of next week.They can assess any changes in the treatment strategy, and then I’ll be ready to “start.”

Meanwhile, I feel great physically. I’m eating a much healthier diet, full of things like kelp, seaweed, daikon, wheatgrass, spirulina, maca, tempeh, turmeric – and the occasional backslide into rocky road ice cream. My acupuncturist is filling me full of needles and Chinese herbs, and I have been the recipient of tremendous prayers and gifts of support. Last night some dear friends held a special healing ceremony for me (and Debra, who is a little under the weather herself). I felt such good will and energetic support. I know I am much more buoyant and healthful because of the wonderful efforts of such friends. Thank you all.

May the coming Shabbos give you peace and rest. And may this Yom Kippur give us all clarity, security, and strength to meet our challenges – together.