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.

Thanks to Aviva

My sister-in-law, Aviva, has set up this blog so I can share with you the details and process of my diagnosis and treatment. Thank you, Aviva! By clicking in the "Follow" area to the right, I gather you can then be notified of when I post a new entry. You may also leave comments for me or other commentators for others to see. Of course, you may also e-mail me directly if you have a private message.

Past entries are available by scrolling down or by clicking on the month button. It should be pretty self-explanatory. I included as the first entry the letter I sent to some family and confidants when I first got the news.

Today's news: Almost from the moment I sent out a message about the lymphoma diagnosis last week, saying that I felt fine, I developed a fever and started feeling sick. Turns out I just picked up a virus that is unrelated to the lymphoma. Nevertheless, when the oncologist saw me on Friday, he decided to postpone the bone marrow biopsy by a week or until I feel better. A viral infection could throw off the results of such a procedure.

I thought I was getting better over the weekend, but I didn't heed my own usual advice, and as soon as a little energy returned, I was out doing activities with the kids. And the fever came back Sunday night. With some concern I contacted doctors about the endoscopy and the endoscopic ultrasound scheduled for Tuesday. There was some disagreement on postponing the procedure, but I decided to go forward.

It's now Tuesday, around 3 PM. My viral symptoms are much less as I spent all of Monday in bed, draining a couple large bottles of Gatorade. I had the endoscopic procedures at UCLA this morning to map the tumor and get a clearer view with the ultrasound. They went well. Biopsies have been sent off to pathology, and my oncologist knows personally the head of pathology at UCLA. So my samples will get judged by the top brass. Preliminary news is good. The lymphoma is right where they thought it was - and nowhere else. It is relatively superficial, not penetrating deeply into the tissue. The doctor was very encouraged by the result. He also checked again for the H.pylori bacterium, because the presence of that infection agent would indicate an easier treatment plan.

Next up will be swallowing a capsule camera to image my lower intestine, where some unclear "activity" was noticed on the PET/CT scans. I do the bone marrow biopsy erev Rosh Hashanah.

Finally, I just want to say I am so grateful for all the outpourings of good wishes and offerings of support. I look forward to seeing all of you when I can and talking about anything - except health. I'm thinking of instituting a movie night where some friends can join me for an evening of whatever good comedy film has been released recently.

A few more favorite photos

First Entry.

I have been diagnosed with a malt lymphoma. As I understand it, this is a type of stomach cancer that has formed among the mucus membrane in my stomach wall. While the news certainly is upsetting, I am told by my growing band of health professionals that this sort of lymphoma has a very high treatment & survival rate. At present they are examining the extent of the disease, and I will have a more comprehensive diagnosis in a few weeks. Other than fatigue and emotional stress from the news, I feel fine. I do not have any overt symptoms, and that is an encouraging sign.

Usually, this area of the stomach acts as a protection to the body. Because I have allergies and asthma, I am more prone to inflammation than most people. In this case, inflammation from GERD (GastroEsophogeal Reflux Disease) led to overactive lymphocytes (our white blood cells that attack infection) and to some cells becoming abnormal.

The cancer was discovered at the end of August, after a follow-up endoscopy I had performed to check the progress in treatment for my GERD and esophogitis. Over the last few years I have had a recurring condition of inflammation in my esophagus that I finally addressed last December. The gastroenterologist performed an endoscopy at that time which showed no trace of lymphoma. In fact, he had even biopsied a polyp in the same area, which showed no lymphoma. I went on proton pump inhibitors (big doses of Prilosec), made a few lifestyle changes (no late-night eating, sleeping with head elevated), and the esophogitis has largely corrected. In the follow-up endoscopy, the doctor noticed a "strange granularity" in my stomach that he decided to biopsy. And there was the malt lymphoma.

The majority of malt lymphoma's are related to a specific bacteria, H. pylori, and can be treated completely with specialized anti-biotics. I tested negative for this bacteria. So the anti-biotic treatment is not indicated, although some health professionals think that false negatives are not uncommon.

I was told of the cancer on a Monday, saw an oncologist on a Wednesday, and had PET/CT scans on a Friday. These non-invasive scans and other blood tests confirmed the lymphoma where it was expected, although they do not give a clear picture. They also revealed some "activity" in my esophagus and lower intestine that "may or may not be significant." And my lymphocyte count is elevated, which also may not be significant, just a reaction. On Friday I am having a bone marrow biopsy to assess the lymphocyte issue. I will be having another endoscopy and an endoscopic ultrasound to map the tumor. And I may swallow a "capsule camera" to image my lower intestine. The wonder$ of technology!

With these procedures completed, the oncologist will devise a treatment regimen that will include radiation and medications. If the tumor proves to be localized, 3-6 weeks of this therapy may be enough. That's "best case," which we may have moved beyond. If there is spread of the disease, I would also have a systemic treatment -- chemotherapy of some sort.

I am generally very happy with my medical care. My long-time internist was terrific at describing the details of my condition to me and Debby. My oncologist is an eminent expert in lymphoma. He and everyone in his office have treated me promptly and with sensitivity and respect. It's a terrific surprise to see a medical office run this well. I have also begun acupuncture treatment to boost my immune system and calm inflammation. My acupuncture doctor is a 38th generation Chinese healer who runs his own Eastern medicine university. And I am aided by my brother-in-law, a physician, and my wife's uncle, a prominent medical researcher, who have offered perspectives and research for my many questions. Everyone (so far) feels this condition can be addressed successfully.

Right now, the hardest part is not knowing. The doctors, while very nice, cannot share what they do not know. So I am waiting, enjoying my kids, and trying to help Debby prepare for High Holidays. Debby has been tremendously supportive, although she also is quite shaken by the news.

I am blessed with wonderful family and friends who are nothing but supportive. I also have friends and family who have gone through their own health challenges and can offer a personal perspective. If you have questions for me about my condition or treatment, please feel free to ask.

Best wishes,

- Craig