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

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