Waiting

The origin of the word cancer is attributed to Hippocrates (460-370 BC). He described the tentacles of tumors as 'crab -like'. Carcinoma or carcinos. A Roman physician, Celsus in 28-50 BC used the Latin: cancer. Then Galen in 130-200 AD, used the Greek word for swelling, Oncos. No matter what you call it, no one wants to hear the diagnosis; or walk through the doors of an Oncology office for the first time.
I was glad Tonia was able to go with me.

Many of my questions couldn't be answered.At least not at this initial visit. The preservative used with my biopsied tissues apparently degraded the sample so that the markers used to stage the lymphoma couldn't be identified. For now that leaves us dependent on more scans, and the need for a ENT referral. I should know more next week.This update though is not the only reason that I write about the visit. I think it brought me closer to my own emotions about my diagnosis, than anything else thus far. Telling loved ones was more difficult; but I was focused on their well-being. That first office visit was the difference between describing a swim with ice flows, and actually taking the plunge.

It wasn't a stellar beginning to an important relationship either. Although an encouraging sign hung on the waiting room wall, "Let the desk know if you wait more than 30 minutes past your scheduled appointment", in my case I spoke with them twice. It seems I had been actually scheduled an hour later than my appointment time. When I looked around the room, I could only guess how difficult that might have been for some of the people waiting with me. Some were far too young and impatient, and should have been playing soccer on such a beautiful day. Others, wheelchair bound and vacant were barely able to shift positions to relieve discomfort. So here is a bit of advice that I hope you will never need. If you have a loved one or friend facing a first oncology appointment, offer to go with them. If they decline, ask them who is going with them. Encourage them to choose someone who will remember what is said, and with whom they feel most comfortable sharing their emotions.

Note to the person behind the desk:
You don't have to be a nurse to offer a cool cloth to the woman sweating in the corner, in an obvious panic attack. Just do it.

MALT

Last Tuesday evening, Febuary 26th, my doctor phoned. It was the same doctor who had preformed a routine Colonoscopy, and added an EGD at my request on Febuary 6th.. The same doctor that had assured me that biopsies would be evaluated, but that everything looked good. The mild epigastric symptoms I had been having were attributed to a small patch of gastritis.

This phone call changed all that. Biopsies from the colon were benign. Biopsies from the area of gastritis were not.  It is a type of non-Hodgkins lymphoma referred to as MALT, or mucosa-associated lymphoid tissue. Malt can occur in the eye orbit, the conjunctiva, salivary glands, thyroid, skin, lungs, stomach or intestines. It is typically slow growing.

Tomorrow I may have more information about the stage of my lymphoma. It is presumed to have been detected early since the area looked benign, was localized, and symptoms were mild. I may need further testing. Bone marrow evaluation for example is common. The doctor that gave me the unwelcome news was quick to say that extensive testing had been done on the samples, and  that this type of lymphoma is very treatable. While on the phone with him I was already dreading telling those I love, and so recall only some of the details he provided. The samples were reported as small type B cells, and are associated with the best possible outcomes. Since then I have done a great deal of reading and will go armed with questions.

I will ask for example about the antigens that were found. Were there CD23 or BC1-1 expressions noted? Was  CD10 present? If so, how many? I know that all of this is technical and will mean nothing to you  but I tell you so that you know that I will do all I can to be able to relay accurate information, and answer questions for loved ones and friends.

It strikes me that few who must confront a cancer diagnosis are as fortunate as I, both in terms of prognosis and in how equipped I am to understand the information that I am provided. I have a strong support system also, in Tonia, my son, and the rest of my family. A multitude of friends also offer their support; those unafraid to walk a very human journey with me, and those of the non-homosapian variety who both depend on me, and nurture.

Life is a journey. Each and every one of us have right now to cherish and to build upon. I hope to take full advantage of all of my experiences, and perhaps better equip others to face their own, or their loved ones challenges and to find hyacinths along their way.